letters in the daily mail

My doctor says I have cfs not me?

It's all sooooo frustrating :roll:

I mean they don't label someone who has Alzheimer's disease as having Chronic Forgefulness Syndrome for heaven's sake :evil:

I too get really cross Trees when people even question the existence of the illness ..... it is such an insult to us sufferers who lives have been changed completely overnight

We were all hardworking, active individuals full of the zest of life ..... and then this happens :cry:

I always have and always will regard myself as having ME ..... CFS sounds so vague and flabby ........ a bit like me really :wah:

lou lou - as far as i can work out from research (charles shepherd etc), and from what ive been told at the clinic and by my doctor, it is the same disease. its also the same as Post-viral syndrome. :? in my letter from the clinic i was diagnosed with 'chronic fatigue syndrome/ME.'

would everyone agree with this or is there some disagreement between medical bods?

funnily enough, i read somewhere that they think the name 'M.E'. is actually as inaccurate as 'chronic fatigue'. i cant remember exactly but apparently what it stands for is no longer a definitely proven element of the disease. im sure one of our more knowledgeable bods on here will know a bit more than i do about this! :shock:

anyway, i prefer to use ME simply because there's more awareness, and as we all known the chronic fatigue is only one part of a whole range of diverse and exciting symptoms! :roll:

apparently in the states its something like CFID or something??! :?

Trees x

ME stands for Myalgic Encephalomyelitis. Myalgic means muscle pain, Encephalo means of the brain and myelitis means inflammation.

they now know that brain inflammation is not always present and it should be Encephalomyopathy meaning 'affecting the brain'.

In Chronic Fatigue and Post Viral Fatigue the brain is not always affected whereas the brains of sever ME patients show changes in MRI not seen in CFS patients.

This is fundamentally where the difference and confusion lies.

Hope this helps

CFIDS stands for Chronic Fatigue and Immune Dysfunction (or deficiency) Syndrome

i think i prefer the US version! :roll:

that's very interesting alicia, and is what i read too... it does seem that it is the same disease though - people just get all levels of severity

although just to confuse everything a bit more the lady at the clinic said - as does some of the lit ive read - that when they eventually find out what it is it will probably be a combination of things. which is why it's so hard to treat. grrrr :x

katie - can you imagine if all diseases were given such stupid names? how about 'chronic difficulty with walking and severe joint pain syndrome' for athiritis. or 'bad cells in my body disease' for cancer? it's so daft.

I am not trying to be flippant but let's cheer ourselves up with a game out of this. Guess the proper name for each condition.

I'll go first. what's this condition?

Chronic haemoglobin deficiency syndrome

Anaemia? :?

How about:Chronic-Compulsive-Restrictive-Undereating-Disorder :shock:

Anorexia Nervosa?

Chronic elevated blood sugar disorder

diabetes?

is this insensitive do you think? :? on the other hand, it's exactly what they've done with our illness...

um.... bloated sore tummy, excessive wind and dodgy digestion syndrome (something a few of us know something about eh? :wink: )

Irritable Bowel Syndrome?

We don't have to do it if you think it is insensitive Trees. I said I wasn't trying to be flippant.

No I don't think it's insensitive at all ..... it's what we have to put up with all the time ...... will do us good to get it off our chests maybe :?

no i agree, just didn't want to come across like i thought those diseases were funny, but i dont think it does seem like that. will try and think of another one...