ME/CFS - The Name

[komodiakarma]

Wessely Is HITLER re-incarnated.. He is a smug son of a bitch that deserves to have his Gonads cut off.. and then told to think POSTIVE and that nothing happened to him as his wounded crotch bleeds...ARRRGHHHHH!!! .

OOOOH waz the matter Dicktor Wessley does it HURT??? wah!. ..Well here lay down on my psychiatric couch and we can discuss how you have come to believe that your balls were cut off.....GAAAAAAAAAAAHD.

I have had this illness for most of my life. LIARS all of them.

[SANDMANCASTHISSPELL]

Did u know about National change the name month in may 2008? Also the patition on line. Have u heard of Dr Nancy Klimas? She is awsome. I love all your videos.;-

SANDMAN CAST HIS SPELL

[SharkBateNait]

Hey thanks, I hadn't heard about the name change, only international ME day May 12th. I'm not sure changing the name is quite what we need though. I have signed the petition to officially seperate CFS and ME in the USA. Yes I do know of Dr Klimas, CFIDS. She seems to be doing us a lot of good. Sorry for the delay, I'll add ya now. :)

[SharkBateNait]

Well, from my ratings so far, it seems some people aren't happy with what I said. It would be nice of them to leave a line or two in explanation, I know a lot of people take this issue pretty seriously but criticising without a reason just seems like venting their frustration on me, which I suppose I signed up for by posting videos.

[SharkBateNait]

Anyway, my best guess at this point, is that changing the name isn't what some people are pursuing, instead they want to seperate ME from CFS completely, gaining recognition of ME as an entirely distinct condition, and leaving all that "chronic fatigue" nonsense behind with "CFS". This is what I gather from the petition website I've added to the "more info" box, courtesy of the BretagneShrew.

[SharkBateNait]

I don't claim to be the most well-informed person on these issues, I'm trying to learn, and I'm doing what I can with what I know. Do feel free to "fill in my blanks" if you feel up to it. I'm learning a lot from those of you who do speak up, and I'm able to pass that along to others. Cheers all

[BretagneShrew]

okay, I'll just explain: Myalgic Encephalomyelitis is an organic post-viral neurological disease. CFS, by definition, is a syndrome, meaning it doesn't have a distinct disease process and does not necessarily represent a homogenous patient group. as ME isn't recognized in the US, people with post-viral ME get diagnosed as having "CFS". As most diagnostic definitions of CFS are vague at best, it is a common misdiagnosis for subclinical hypoidism, missed malignacies, psychiatric disorders etc.

[BretagneShrew]

(^^whoops misspelled hypothyroidism) anyhow, the "CFS" patient group

undoubtedly consists of people suffering from illnesses other than ME-itis. Considering the terms and definitions for CFS and ME are now politically meshed in alot of places, the ME and CFS/ME patient groups are mixed bags aswell, leading to much confusion over the "illness" acctually is. This has stalled research as looking for common clinical features in groups of people who do not all have the same disease is pointless.

[BretagneShrew]

yes, I know the head feeling like cement thing after concentrating. everything starts hitting a brick wall! damn suprachiasmic damage!!!

[SharkBateNait]

whatta nerd, showing off your fancy technical vocab ;-P

[synapse131]

Well stated. By creating a definition of "CFS" that focuses on what it is not, they have created an opportunity to create an unverifiable hypothesis that can be manipulated to represent differing patient populations.