Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 " a Carnes " wrote: (CFS) It is a stupid, meaningless name, that tells us nothing about what we really have wrong with us. Yeah, it is a dumb name. Remember the ny Cash song " A Boy Named Sue " in which he sings about having to hunt down and kill the lowdown sonuvabitch that saddled him with that sorry name? Well look at how the very people who gave us that name are trying to sanitize the history of denigration that they did nothing to alter, by saying that an earlier name of " Yuppie Flu " was because there was an honest mistaken association with young urban professionals and Type A " driven " personalities. That's a bald faced lie. There was never any such real association. " Yuppie Flu " was from total scorn and derision for those whiny rich complaining hypochondriacs in their cozy mountain mansions who had nothing better to do than dream up an imaginary laughable " cough " that doesn't go away. I know this isn't a political forum, but it burns my butt that now that CFS is finally being forced down the CDC's throats, they are sanitizing the history of CFS-scorn by " legitimizing " all their years of denial by misdirecting pent up anger at the name itself and claiming " confusion " and a lack of credible evidence- instead of at the low-down-sons-of-bitches who saddled us with the name and made us suffer with it all these years. When did it become a prerequisite that the illness name can define the summary aspects in a word or two? And why does that " requirement " only apply to " CFS " and to no other illness? The people who want to deny their responsibility to LISTEN to illness syndromic descriptions might as well say that " Down Syndrome " obviously means the sufferer is covered with feathers by that ridiculous logic. Sure it's a dumb name, but the reasons the CDC gave it - and stuck to it and failed to recognize ME are all part of the history of actions that pretty much speak for themselves. And the only reasonable thing to do is hunt them down and beat the tar out of them for it. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 > > When did it become a prerequisite that the illness name can define > the summary aspects in a word or two? And why does > that " requirement " only apply to " CFS " and to no other illness? > Thanks I strongly agree with this. Nil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Just to be contrary: Well, it may be sub-optimal, but it got me here. All I know was I was tired all the time and CFS describes that perfectly, even if almost everything else the CDC says about it is crap. If the first 8 things coming back from google referred only to " Myalgic Encepholmyelitis " I'm not sure I would have read any of them. On the other hand, I'm not sure that's what I've got either, but I've got *something*, that's for sure. - Bob Niederman On 7/9/06, erikmoldwarrior <erikmoldwarrior@...> wrote: > > " a Carnes " wrote: > > (CFS) It is a stupid, meaningless name, that tells us nothing about > what we really have wrong with us. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Bob, There is nothing wrong with saying you are tired a lot. And Chronic Fatigue is certainly one of the symptoms of our illness. But you will find that among people who have suffered for many years with this, the label CFS becomes a bit of a sore spot because people who do not know better assume that since this illness is named 'chronic fatigue,' all we need is some rest and to 'chill' a bit. But as you have discovered, that is not helpful. You definitely have got 'something.' Have you been tested for Lyme Disease or mycoplasma? Chronic infection is common in this illness. Other possibilities are low glutathione (which can be caused by a hereditary problem with metals detox), mold illness, EMF sensitivity, retro-viral infection (such as HHV6), and some others. If you are not seeing a doctor who specializes in CFS and/or Lyme Disease, you will not likely get much help that can make a difference. Your recent case history is a perfect fit with CFS, by the way. But also with Lyme Disease. In my opinion that is the first infection to check into. --Kurt Re: Re: Senseless Name Just to be contrary: Well, it may be sub-optimal, but it got me here. All I know was I was tired all the time and CFS describes that perfectly, even if almost everything else the CDC says about it is crap. If the first 8 things coming back from google referred only to " Myalgic Encepholmyelitis " I'm not sure I would have read any of them. On the other hand, I'm not sure that's what I've got either, but I've got *something*, that's for sure. - Bob Niederman On 7/9/06, erikmoldwarrior <erikmoldwarrior@ <mailto:erikmoldwarrior%40earthlink.net> earthlink.net> wrote: > > " a Carnes " wrote: > > (CFS) It is a stupid, meaningless name, that tells us nothing about > what we really have wrong with us. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Names for a lot of diseases are simple medical terminology that describes the condition...arthritis...inflammation of the joints...ME is just such a term. A fancy Latin name that just describes the part that's effected and that it's inflamed/infected " itis " . So names of a lot of better accepted, recognized diseases are just as senseless IMHO. It just repeats what we say...my joints hurt (arthritis) in a fancy way that disguises the description. It doesn't really give a Name, or a cause or a cure, just a fancy description for common terminology Diane in MI Re: Senseless Name " a Carnes " wrote: (CFS) It is a stupid, meaningless name, that tells us nothing about what we really have wrong with us. Yeah, it is a dumb name. Remember the ny Cash song " A Boy Named Sue " in which he sings about having to hunt down and kill the lowdown sonuvabitch that saddled him with that sorry name? . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 What the heck is " Lyme " except the name of the town where Bb was first noticed - by a housewife who fought the medical establishment that saw each and every case as JRA without perceiving, as Polly Murray did - that this " JRA " was acting suspiciously like an infectious illness? Multiple Chemical Sensitivity is an extremely descriptive name. You'd think that would satisfy those who demand that the name BE the illness. But MCS gets no respect. Whenever anyone says they can't believe your illness description because the NAME of the illness is unbelievable - it's just a ridiculous means to call you a liar to your face, while simultaneously denying that they are calling you a liar. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Well said, you might want to add the NCA that meets regulary with the CDC with their advisory committee and the lack of name change. In my opinion they have their reasons for continuing to drag the lack name change along. This is their response to the anger of their supporters when they agreed it is not time for a name change. >> " Questions raised in the article about the name " chronic fatigue syndrome " may have been mistaken for a shift in the Association's policy on the name change. In 1998( A LITTLE OUT DATED )The CFIDS Association of America's Board of Directors adopted the following policy statement on the name change: " The Association's Board is solidly committed to facilitating a change from the name `chronic fatigue syndrome' to a name that more accurately describes the illness and leads to greater acceptance of the illness. " This policy continues to guide Association activities related to the name change. Although the name of a product or cause is an essential element of any branding or education campaign, in the case of renaming CFS, the decision about what to call it must be considered in a broader context. The two processes – building consensus on a name change and developing a high profile awareness campaign -- can and should occur simultaneously, as long as there is continuous sharing of information to maximize the success of both efforts in enhancing the credibility of CFS. In fact, when the name is changed, a cohesive multi-media communications and marketing campaign will be paramount to the public's acceptance and adoption of the new term. Quoted from an NCA publication. (Are they not suppose to be having a huge public awareness campaign going on now and with no name change?) By the way has anyone one seen the publications in the mags for CFS, they are pitiful, in my opinion it was a real waste of supports money but this is only my opinion. So we have more then the CDC to blame but I can't help but wonder what the benefits are?? Kate > > (CFS) It is a stupid, meaningless name, that tells us nothing about > what we really have wrong with us. > > > Yeah, it is a dumb name. > Remember the ny Cash song " A Boy Named Sue " in which he sings > about having to hunt down and kill the lowdown sonuvabitch that > saddled him with that sorry name? > > Well look at how the very people who gave us that name are trying > to sanitize the history of denigration that they did nothing to > alter, by saying that an earlier name of " Yuppie Flu " was because > there was an honest mistaken association with young urban > professionals and Type A " driven " personalities. > That's a bald faced lie. > There was never any such real association. > " Yuppie Flu " was from total scorn and derision for those whiny rich > complaining hypochondriacs in their cozy mountain mansions who had > nothing better to do than dream up an imaginary laughable " cough " > that doesn't go away. > I know this isn't a political forum, but it burns my butt that now > that CFS is finally being forced down the CDC's throats, they are > sanitizing the history of CFS-scorn by " legitimizing " all their > years of denial by misdirecting pent up anger at the name itself and > claiming " confusion " and a lack of credible evidence- instead of at > the low-down-sons-of-bitches who saddled us with the name and made > us suffer with it all these years. > > When did it become a prerequisite that the illness name can define > the summary aspects in a word or two? And why does > that " requirement " only apply to " CFS " and to no other illness? > The people who want to deny their responsibility to LISTEN to > illness syndromic descriptions might as well say that " Down > Syndrome " obviously means the sufferer is covered with feathers by > that ridiculous logic. > Sure it's a dumb name, but the reasons the CDC gave it - and stuck > to it and failed to recognize ME are all part of the history of > actions that pretty much speak for themselves. > And the only reasonable thing to do is hunt them down and beat the > tar out of them for it. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 It's like calling diabetes Chronic Thirst Syndrome. Dumb. yildiz <yildiz22@...> wrote: > > When did it become a prerequisite that the illness name can define > the summary aspects in a word or two? And why does > that " requirement " only apply to " CFS " and to no other illness? > Thanks I strongly agree with this. Nil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 If name needs to give a description than than CFS should be chronic neuro endocrine immune sceletal circulatory digestive reproductive respiratory urinary....dysfunction syndrome. This is what i have now. Nil Re: Re: Senseless Name > Names for a lot of diseases are simple medical terminology that describes > the condition...arthritis...inflammation of the joints...ME is just such a > term. A fancy Latin name that just describes the part that's effected and > that it's inflamed/infected " itis " . So names of a lot of better accepted, > recognized diseases are just as senseless IMHO. It just repeats what we > say...my joints hurt (arthritis) in a fancy way that disguises the > description. It doesn't really give a Name, or a cause or a cure, just a > fancy description for common terminology > Diane in MI > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 I LOVE IT!!!!!! yildiz <yildiz22@...> wrote: If name needs to give a description than than CFS should be chronic neuro endocrine immune sceletal circulatory digestive reproductive respiratory urinary....dysfunction syndrome. This is what i have now. Nil Re: Re: Senseless Name > Names for a lot of diseases are simple medical terminology that describes > the condition...arthritis...inflammation of the joints...ME is just such a > term. A fancy Latin name that just describes the part that's effected and > that it's inflamed/infected " itis " . So names of a lot of better accepted, > recognized diseases are just as senseless IMHO. It just repeats what we > say...my joints hurt (arthritis) in a fancy way that disguises the > description. It doesn't really give a Name, or a cause or a cure, just a > fancy description for common terminology > Diane in MI > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 I LOVE IT!!!!!! yildiz <yildiz22@...> wrote: If name needs to give a description than than CFS should be chronic neuro endocrine immune sceletal circulatory digestive reproductive respiratory urinary....dysfunction syndrome. This is what i have now. Nil Re: Re: Senseless Name > Names for a lot of diseases are simple medical terminology that describes > the condition...arthritis...inflammation of the joints...ME is just such a > term. A fancy Latin name that just describes the part that's effected and > that it's inflamed/infected " itis " . So names of a lot of better accepted, > recognized diseases are just as senseless IMHO. It just repeats what we > say...my joints hurt (arthritis) in a fancy way that disguises the > description. It doesn't really give a Name, or a cause or a cure, just a > fancy description for common terminology > Diane in MI > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 How about Microwave Radiation Sickness? Only kidding - but half serious! The truth will piss you off - and then again it can set you free. paul If name needs to give a description than than CFS should be > chronic neuro endocrine immune sceletal circulatory digestive reproductive > respiratory urinary....dysfunction syndrome. > > This is what i have now. > Nil > Re: Re: Senseless Name > > > Names for a lot of diseases are simple medical terminology that describes > > the condition...arthritis...inflammation of the joints...ME is just such a > > term. A fancy Latin name that just describes the part that's effected and > > that it's inflamed/infected " itis " . So names of a lot of better accepted, > > recognized diseases are just as senseless IMHO. It just repeats what we > > say...my joints hurt (arthritis) in a fancy way that disguises the > > description. It doesn't really give a Name, or a cause or a cure, just a > > fancy description for common terminology > > Diane in MI > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hello, I think, , that the problem with " chronic fatigue " is that that condition applies to a large percentage of population and is a recoverable condition. Fatigue feels basically OK when you're healthy because you know that it's just a temporary status thing. So, this commonly experienced symptom of chronic fatigue becomes a real barrier when it's attached to a real disease like M.E. Myalgic Encephalomyelitis is a different viral onset CNS dysfunction in which there is enough systemic damage to lower the functionality dramatically. This I think doctors and the public could understand. I understand that the problems in the UK escalated when CFS was introduced into the medical jargon to describe this disease. Du Pre Website: http://www.angelfire.com/poetry/soareagle/index.html " By words the mind is winged. " Aristophanes What the heck is " Lyme " except the name of the town where Bb was first noticed - by a housewife who fought the medical establishment that saw each and every case as JRA without perceiving, as Polly Murray did - that this " JRA " was acting suspiciously like an infectious illness? Multiple Chemical Sensitivity is an extremely descriptive name. You'd think that would satisfy those who demand that the name BE the illness. But MCS gets no respect. Whenever anyone says they can't believe your illness description because the NAME of the illness is unbelievable - it's just a ridiculous means to call you a liar to your face, while simultaneously denying that they are calling you a liar. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 " Du Pre " wrote: > I think, , that the problem with " chronic fatigue " is that that condition applies to a large percentage of population and is a recoverable condition.< And I think that the problem is that PEOPLE disingenuously seize upon CDC created " CFS " confusion to pretend that they cannot understand the distinction between CF and CFS even after repeated explanations. How can a population which can readily assimilate colloquialisms such as " Thats BAD " (meaning good) and " She's PHAT " (meaning excellent) honestly be unable to comprehend the difference unless the REAL problem is that they just don't want to? And those who play the " I'm too dumb to get it " game are being allowed to maintain the pretense that they cannot mentally understand the difference by those of us who ENABLE that pretense by agreeing that it's just too darn confusing for anyone to understand. When it's really no more difficult than the many other confusing terms they master with ease. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hey I like that, maybe the longr the name, the scarier the sound of it, it would get more respect! Diane in MI Re: Re: Senseless Name > Names for a lot of diseases are simple medical terminology that describes > the condition...arthritis...inflammation of the joints...ME is just such a > term. A fancy Latin name that just describes the part that's effected and > that it's inflamed/infected " itis " . So names of a lot of better accepted, > recognized diseases are just as senseless IMHO. It just repeats what we > say...my joints hurt (arthritis) in a fancy way that disguises the > description. It doesn't really give a Name, or a cause or a cure, just a > fancy description for common terminology > Diane in MI > ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.9.10/383 - Release Date: 7/7/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Seems to need an addition: " Major organs including skin. " > > Hey I like that, maybe the longr the name, the scarier the sound of it, it would get more respect! > Diane in MI > > From: yildiz: > > If name needs to give a description than than CFS should be > chronic neuro endocrine immune sceletal circulatory digestive reproductive > respiratory urinary....dysfunction syndrome. > > This is what i have now. > Nil > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 I'd settle for Chronic Exhaustion Syndrome. Plugging define:exhastion into gogole yields: " Definitions of *exhaustion* on the Web: extreme fatigue debilitation: serious weakening and loss of energy the act of exhausting something entirely wordnet.princeton.edu/perl/webwn<http://www.google.com/url?sa=X & start=0 & oi=defin\ e & q=http://wordnet.princeton.edu/perl/webwn%3Fs%3Dexhaustion> a marked diminution in capacities that are usually taken for granted; the result of failing to create a pocket for the two-dimensional component of the personality, which failure causes " creativity poisoning. " www.geocities.com/Athens/Delphi/5179/Glossary.htm<http://www.google.com/url?sa=X\ & start=4 & oi=define & q=http://www.geocities.com/Athens/Delphi/5179/Glossary.htm> " and, perhaps most significantly " The point at which the athlete cannot maintain a high level of physical activity in spite of an adequate blood glucose supply. It is related to a change in the muscle itself. www.cptips.com/glosary.htm<http://www.google.com/url?sa=X & start=6 & oi=define & q=ht\ tp://www.cptips.com/glosary.htm> " which perfectly captures the idea that we go from aerobic to anaerobic in nothing flat - which is much of the reason for our intolerance to exercise - Bob Niederman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hi Bob, That is the name used in Germany, Chronischen Erschöpfungssyndrom - auf Deutsch http://mitglied.lycos.de/cfs/ in German - translates most closely to chronic exhaustion syndrome. Does not mean fatigue or tired. (Sprechen sie Deutsch?) Jill ___________________________________ Message #101413 Re: Senseless Name I'd settle for Chronic Exhaustion Syndrome. Plugging define:exhastion into gogole yields: Definitions of *exhaustion* on the Web: extreme fatigue debilitation: serious weakening and loss of energy the act of exhausting something entirely wordnet.princeton.edu/perl/webwn<http://www.google.com/url?sa=X & start=0 & oi=d efin\ e & q=http://wordnet.princeton.edu/perl/webwn%3Fs%3Dexhaustion> a marked diminution in capacities that are usually taken for granted; the result of failing to create a pocket for the two-dimensional component of the personality, which failure causes " creativity poisoning. " www.geocities.com/Athens/Delphi/5179/Glossary.htm<http://www.google.com/url? sa=X\ & start=4 & oi=define & q=http://www.geocities.com/Athens/Delphi/5179/Glossary.ht m> " and, perhaps most significantly " The point at which the athlete cannot maintain a high level of physical activity in spite of an adequate blood glucose supply. It is related to a change in the muscle itself. " www.cptips.com/glosary.htm<http://www.google.com/url?sa=X & start=6 & oi=define & q=ht\ tp://www.cptips.com/glosary.htm> which perfectly captures the idea that we go from aerobic to anaerobic in nothing flat - which is much of the reason for our intolerance to exercise - Bob Niederman ______________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Jill, No, no german spoken here. Just seemed like exhaustion fit the bill better and plugging it into the google dictionary confirmed that. CES would capture the feeling better for the un-knowing, I think. - Bob Niederman On 7/12/06, Jill McLaughlin <jillmclaughlin@...> wrote: > > > > Hi Bob, > > That is the name used in Germany, Chronischen Erschöpfungssyndrom - auf > Deutsch > http://mitglied.lycos.de/cfs/ > > in German - translates most closely to chronic exhaustion syndrome. Does > not > mean fatigue or tired. (Sprechen sie Deutsch?) > > Jill > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Bob, Niederman? Thought maybe. Darn. Mine's pretty rusty but this looks like a good group. Found the full testimony of Dr. Loveless to a Congressional committee from May 1995. Do not remember ever seeing this in its entirety. Wouldn't attempt formal translation, but was basically a case study. It is the same story that we have read many times - the inability to get a diagnosis, disbelief and dismissal of many drs, referrals to psychiatrists, lack of objective evidence, inability to work and financial ramifications, the grueling process of trying to obtain benefits. He does make the point that the stress of all this greatly worsens the patients health. The last sentence says: " Ich hoffe, daß Ihnen und denen, die Sie lieben, dieses Szenario nie widerfährt. " " I hope that this scenario never happens to you and those you love. " More than 10 years later, little has changed. Jill _________________________ Message #101522 Re: Re: Senseless Name Jill, No, no german spoken here. Just seemed like exhaustion fit the bill better and plugging it into the google dictionary confirmed that. CES would capture the feeling better for the un-knowing, I think. - Bob Niederman On 7/12/06, Jill McLaughlin <jillmclaughlin@...> wrote: > > > > Hi Bob, > > That is the name used in Germany, Chronischen Erschöpfungssyndrom - auf > Deutsch > http://mitglied.lycos.de/cfs/ > > in German - translates most closely to chronic exhaustion syndrome. Does not > mean fatigue or tired. (Sprechen sie Deutsch?) > > Jill > Quote Link to comment Share on other sites More sharing options...
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