letters in the daily mail

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i've finally got round to reading the letters in the daily mail as posted on the ME association. :roll:

something that really stood out for me was the almost universal belief that chronic fatigue syndrome was NOT the same thing as ME, and was actually less severe :? :x

coming from both sufferers and non sufferers, i found this yet another disheartening example of a) how little is still known about our peculiar illness b) that there is real confusion between fatigue, and chronic fatigue syndrome and c) the ammount of confusion and prejudice it engenders.

as someone diagnosed recently with CFS - which specialists say is just a new or different way of saying ME - i would be furious if someone told me i had a less severe form of ME! :evil:

also, the woman i saw at the clinic used the terms interchangeably and usually said CFS/ME, which im actually more comfortable with. (although i usually use ME now as people are more aware of this). she also said they'd probably have to find a different term than CFS at some point as that didn't really cover it (which i agree with).

why is it that with most illnesses people just accept you've got something horrible and the focus is on how to make things better, while with CFS/ME so many people are still anxious to prove it doesn't even exist and we're just a bunch of layabouts? it seems very cruel to me sad

Trees x

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  • Posted

    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 sad

    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:

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  • Posted

    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

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  • Posted

    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

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  • Posted

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

    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.

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  • Posted

    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

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  • Posted

    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: )

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  • Posted

    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. smile

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  • Posted

    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 :?
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  • Posted

    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... smile
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