Aa
second section of poll
I would join a separate forum for myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS)
I've seen recently the conglomeration of the two terms as they can't make up their minds CFS/ME or ME/CFS, depending on which side of the Atlantic you live on and wether or not your symptoms are severe or not. As it would appear if you have worse than mild conditions, its ME.
Whatever, its just semantics.
Acker, well done for typing all that out as I would had to have several goes at that. The points are bang on and well thought out. however, I believe that the title of the forum for now should be something that all recognise or would look for. When so many in the medical profession are either blind or unhearing of our plight, we don't need to alter the name of it, especially as the XMRV findings have been put on ice.
We all know how we feel, we all know others that are better off than us and those that are sadly worse off than ourselves.
Whilst I do think that a forum for our condition is merited, a name change of a grand degree perhaps would see less people visiting and contributing to it.
The two terms CFS/ME need to be consigned to history, as a way of getting rid of the rubbish and nonsenical drivel that the UK's NICE guidelines have annotated for the condition. Tell me, are all the things you are suffering from just in your head??? No, exactly.
New term, new definition, new funding, new thoughts, all need to be addressed for this condition. I've had a look at the websites for the UK ME organisations, they aren't all that. That's why it is important to have places such as this to be able to come toghether and throw ideas around and at times laugh at ourselves.
Anyway, I've lost my train of thought, lol,
Whatever, its just semantics.
Acker, well done for typing all that out as I would had to have several goes at that. The points are bang on and well thought out. however, I believe that the title of the forum for now should be something that all recognise or would look for. When so many in the medical profession are either blind or unhearing of our plight, we don't need to alter the name of it, especially as the XMRV findings have been put on ice.
We all know how we feel, we all know others that are better off than us and those that are sadly worse off than ourselves.
Whilst I do think that a forum for our condition is merited, a name change of a grand degree perhaps would see less people visiting and contributing to it.
The two terms CFS/ME need to be consigned to history, as a way of getting rid of the rubbish and nonsenical drivel that the UK's NICE guidelines have annotated for the condition. Tell me, are all the things you are suffering from just in your head??? No, exactly.
New term, new definition, new funding, new thoughts, all need to be addressed for this condition. I've had a look at the websites for the UK ME organisations, they aren't all that. That's why it is important to have places such as this to be able to come toghether and throw ideas around and at times laugh at ourselves.
Anyway, I've lost my train of thought, lol,
I so agree with you that CFS is a terribly inadequate, misleading label. I think Post Viral Fatigue is better, but the illness has so many more symptoms than just fatigue. I think myalgic encephalomyelitis (used in the UK exclusively and differentiated from CFS in Canada) describes a lot
myalgic (myalgia)= pain in a muscle or group of muscles
encephalomyelitis= inflammation of the brain and spinal cord
It just seems crazy to label a disease by one symptom, probably not even the predominant symptom in most people. I think many would agree the cognitive problems are the worst.
I wonder where other people sit on this. Anyone?
myalgic (myalgia)= pain in a muscle or group of muscles
encephalomyelitis= inflammation of the brain and spinal cord
It just seems crazy to label a disease by one symptom, probably not even the predominant symptom in most people. I think many would agree the cognitive problems are the worst.
I wonder where other people sit on this. Anyone?
while we're at it, please consider alternative name(s) for this new forum, if we get the go-ahead. i'm not real good at explaining myself, so here goes:
the advent of the name 'chronic fatigue syndrome' is relatively new - late 80's. i find it unhelpful in that a lot of people with symptoms that can't be explained are lumped into this category, making treatment and monitoring very difficult.
'syndrome' to me just means, 'we dunno'.
'chronic' - okay - it is a persistent condition, but for some, it comes and goes, day to day, week to week; for some, it is mid-term or long term, but temporary. i don't find this term accurate.
'fatigue' is true but really - we're exhausted! fatigue is something that a well person would sleep off, or push through, or rest on...
all that said, on the whole, i find that the term shows the perception (that was AT THE TIME) of how unknown the causes were, if any. we now know that it often seems to follow a viral illness, that then doesn't go away. i think it's important to include this VIRAL element in THE TITLE, which stops people saying 'oh, i had fatigue for a few weeks and i took vitamins and had a massage and exercised then i felt great'... THAT is NOT 'cfs'!
any way, please consider "POST-VIRAL FATIGUE"; (i would call it 'post-viral exhaustion' if i could, but at least post-viral fatigue is already established as a name that is accepted and understood in the medical literature (apparently).)
if you have time (or energy) please take a look at the wikipedia page on same:
http://en.wikipedia. org/wiki/Alternative_names_for_chronic_fatigue_syndrome
i hope that the term cfs one day just becomes a part of the history of... cfs... (as well as the illness itself!) because i believe the term is no longer as useful as it once was, and that help and support is diminished because of the confusion caused by the non-fit of the term to our condition.
thanks folks
in unity
the advent of the name 'chronic fatigue syndrome' is relatively new - late 80's. i find it unhelpful in that a lot of people with symptoms that can't be explained are lumped into this category, making treatment and monitoring very difficult.
'syndrome' to me just means, 'we dunno'.
'chronic' - okay - it is a persistent condition, but for some, it comes and goes, day to day, week to week; for some, it is mid-term or long term, but temporary. i don't find this term accurate.
'fatigue' is true but really - we're exhausted! fatigue is something that a well person would sleep off, or push through, or rest on...
all that said, on the whole, i find that the term shows the perception (that was AT THE TIME) of how unknown the causes were, if any. we now know that it often seems to follow a viral illness, that then doesn't go away. i think it's important to include this VIRAL element in THE TITLE, which stops people saying 'oh, i had fatigue for a few weeks and i took vitamins and had a massage and exercised then i felt great'... THAT is NOT 'cfs'!
any way, please consider "POST-VIRAL FATIGUE"; (i would call it 'post-viral exhaustion' if i could, but at least post-viral fatigue is already established as a name that is accepted and understood in the medical literature (apparently).)
if you have time (or energy) please take a look at the wikipedia page on same:
http://en.wikipedia. org/wiki/Alternative_names_for_chronic_fatigue_syndrome
i hope that the term cfs one day just becomes a part of the history of... cfs... (as well as the illness itself!) because i believe the term is no longer as useful as it once was, and that help and support is diminished because of the confusion caused by the non-fit of the term to our condition.
thanks folks
in unity
Hi,
We look forward to your feedback and suggestions.
Best,
Cheryl
MH Community Mgr
We look forward to your feedback and suggestions.
Best,
Cheryl
MH Community Mgr
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