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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Live webcast IoM meeting Jan. 27th 1:pm starting

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
@justinreilly according to Tuller there was an attempt at encephalomyelitis in the US:

In the 2000s, the agency further enraged patients when it refused to support a movement to change the name to myalgic encephalomyelitis and instead spent millions on an awareness campaign promoting the name “chronic fatigue syndrome.”

So I think the nomen is known though it's a shame that Tuller couldn't define its' meaning accurately:

The illness is also known as “myalgic encephalomyelitis,” which means “painful inflammation of the brain and spinal cord,” and many people now refer to it as ME/CFS.

He missed out muscles.

http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome

I think there will be a fight still over the brain and spine inflammation. And about which discipline should take ownership.

But as there are no further public sessions that I am aware of - I guess we have to wait for 12 months now to hear anything.
 

Ember

Senior Member
Messages
2,115
Nit-picking here, but it is pronounced PRIM-er, not PRIME-er.
From English Language and Usage: "Apparently this situation is only recognizable to American English speakers. I've only ever heard it pronounced with a short 'i,' but this seems to be completely unheard of to British English speakers." As a Canadian, I use the British pronunciation.
 

Sing

Senior Member
Messages
1,782
Location
New England
Names:

My view is that ME, and even more so ME-itis, are highly suggestive of a psychogenic narcissistic condition. I am very sorry to say this because I wish it weren't a case of from the frying pan, with CFS, and into the fire, with ME. I feel even more ashamed to call what I have ME than I do CFS just because of how the word ME implies a condition of morbid self-centeredness. This is what has been projected onto us all along and I am as extremely desirous of slipping this destructive, false yoke as all the rest of us. The long complicated name referring to inflammation in the brain and muscles also seems embarrassing to me since it is not established that this is the problem medically, and further embarrassing because it seems as though we patients are wanting to cover our nakedness--having an unaccepted, unestablished disease--by latching on to a name which is far too much of one. Imagine someone very poor and declassé who gets invited to a high class event of social insiders. She immediately falls into the error of gross over-dressing for the occasion, and so advertises to all her nebulous origins. The end result is more shame.

For these reasons, of the existing possibilities the only one which I find appealing is Ramsay's Disease. That name seems solid and interesting to me, though it does not define this illness anymore than the others do.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I think it would be better if they adopted only the initials: "M.E." (Instead of the full name.)
One advantage of using 'ME' is that people are already familiar with it.

But I quite like "Ramsay's disease", and perhaps that would be my preferred name for the illness.

And I quite like "Neuro-endocrine-immune disorder disease" (NEID) because it describes the various systems of the body that are affected, and it makes it very clear that we're not talking about chronic fatigue.
 
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SOC

Senior Member
Messages
7,849
I think it would be better if they adopted only the initials: "M.E."
One advantage of using 'ME' is that people are already familiar with it.

But I quite like "Ramsay's disease", and perhaps that would be my preferred name for the illness.

And I quite like "Neuro-endocrine-immune disorder" (NEID) because it describes the various systems of the body that are affected, and it makes it very clear that we're not talking about chronic fatigue.
I'm with @WillowJ on Ramsay's Disease. It's not going to happen. Scientific naming is simply not done that way anymore. We're wasting our time supporting it as a possibility and making ourselves look ignorant of current practice.

Neuro-endocrine-immune disorder (NEID) has the value of describing the illness as well as a pronounceable acronym. Not sure I'm crazy about that pronunciation, though. I don't really want to say I have "need". ;) But that's a relatively small point in the scheme of things.
 

Nielk

Senior Member
Messages
6,970
I think it would be better if they adopted only the initials: "M.E." (Instead of the full name.)
One advantage of using 'ME' is that people are already familiar with it.

But I quite like "Ramsay's disease", and perhaps that would be my preferred name for the illness.

And I quite like "Neuro-endocrine-immune disorder" (NEID) because it describes the various systems of the body that are affected, and it makes it very clear that we're not talking about chronic fatigue.

Dr. Ramsey actually called it Myalgic Encephalomyelitis. http://www.name-us.org/DefintionsPages/DefRamsay.htm
 

Purple

Bundle of purpliness
Messages
489
I'm with @WillowJ Neuro-endocrine-immune disorder (NEID) has the value of describing the illness as well as a pronounceable acronym. Not sure I'm crazy about that pronunciation, though. I don't really want to say I have "need". ;) But that's a relatively small point in the scheme of things.

I don't like the sound of the word 'disorder'. 'Disorder' sounds to me like 'nothing much wrong'. NEID - neuro-endocrine-immune disease would have the same acronym.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
@SOC , since pronunciation in English is somewhat arbitrary anyway, we could say NEID was pronounced like "neighed" :woot:

Or skip the "endocrine"; I think there is some of that but I think the cortisol stuff, which everyone thinks of first, is a consequence of being profoundly ill for a long time, and not an actual central pathology of this particular disease.

Though NID doesn't sound helpful if said as a word, but N.I.D. sounds more like a health agency, or a special kind of ID card, which is probably not all bad...
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Interesting that we're even discussing the possibility of an official name change!
Is this a first?

that is cool, but not the first

2003: http://www.iacfsme.org/CFSNameChange/tabid/99/Default.aspx
http://cfids-cab.org/cfs-inform/CFS.name/cfs.name.html
CAA's 2002 statement: http://www.cfids.org/archives/2002/2002-3-article02.asp (with link to page with more links to the history of the 2003 recommendation)

2007: http://www.cfs-healing.info/name-change.htm

ETA:
My favorite from the 2007 meeting: Neuroimmunological entropy syndrome (NES)
not really, as I don't think "entropy" is a medical term, but, it's descriptive. ;)

ETA 2: another link:
http://phoenixrising.me/resources/chronic-fatigue-syndrome-name-change-efforts
 
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SOC

Senior Member
Messages
7,849
@SOC , since pronunciation in English is somewhat arbitrary anyway, we could say NEID was pronounced like "neighed" :woot:

Or skip the "endocrine"; I think there is some of that but I think the cortisol stuff, which everyone thinks of first, is a consequence of being profoundly ill for a long time, and not an actual central pathology of this particular disease.

Though NID doesn't sound helpful if said as a word, but N.I.D. sounds more like a health agency, or a special kind of ID card, which is probably not all bad...

NID is not bad, although a bit too much like small insects. :p Still, all-in-all it fits and feels more accurate to me than NEID.

Let's see, what else works? .... Acquired Immune... no wait, that's taken.....

I'm still favoring one someone (@Mark?) came up with a while back -- WTH Disease. I dunno about everyone else, but that's pretty much a theme in this illness for me. Every time I turn around it seems like there's some weird new symptom cropping up... wth? Just when I've fought back some ground, some *&%$ happens and it's a downhill slide again...wth? Just when I think I've figured it out, I figure out I'm all wrong. (I don't have infections. Yes, I do. I don't have OI. Yes, I do. I don't have immune dysfunction. Yes, I do. I don't have methylation problems. Yes, I do.) WTH?