Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Rich et al, i think an important question to ask, and nearly impossible to answer at this point is not if stress is a co-factor in CFS, but is it more a factor than it is in many other diseases like cancer and heart disease, MS and even AIDS. it's hard to think of a major medical condition where stress isn't a significant factor. thanks bill > > > Why do you always have to throw in a little jab about stress > playing > > a part even though it is only an associative variable that many of > us > > didnt' have? > > Don't you know what we've been through with this? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 cort this is a fascinating question, and there is tons of info out there on it. it seems like there really is info on both sides of the idea of stress and how it relates to cancer. here is one link that i found in just the quickest of searches: http://news-service.stanford.edu/news/2003/october8/psychiatric.html but another interesting facet that connects this to CFS is how they discuss NK cell activity (which among other things are cancer fighting cells) and how it is affected by stress. personally, i think stress is not the primary cause of CFS, but certainly is a factor. thanks bill -- In , cort johnson <cortttt@...> wrote: > > I read surprisingly enough that several studies > examining stress in cancer have found that it does not > appear to be a risk factor for coming down with > cancer; that is increased levels of stress for a > particular period of time do not appear to predispose > one to cancer. > > Cort > > --- winsomme <winsomme@...> wrote: > > > Hi Rich et al, > > > > i think an important question to ask, and nearly > > impossible to answer > > at this point is not if stress is a co-factor in > > CFS, but is it more > > a factor than it is in many other diseases like > > cancer and heart > > disease, MS and even AIDS. > > > > it's hard to think of a major medical condition > > where stress isn't a > > significant factor. > > > > thanks > > bill > > > > > > > > > > > > > > > > > Why do you always have to throw in a little jab > > about stress > > > playing > > > > a part even though it is only an associative > > variable that many > > of > > > us > > > > didnt' have? > > > > Don't you know what we've been through with > > this? > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Jill McLaughlin < wrote: > A good deal of what everyone has been through is to a large degree due to what continues to ignore and excuse. Perhaps the real " CFS deniers " are those who fail to recognize the damage that the name and overly broad, non-specific definition have caused, which has been proven. Blaming drs and making them the scapegoats may be emotionally satisfying to some but is not productive. Misguided and misdirected anger, especially when based on erroneous and unsupportable personal beliefs, can be dangerous and detract from productive issues. Drs believe what they read in journals and media articles about CFS - and " chronic fatigue " and act accordingly. CFS is heterogeneous by definition and not what anyone believes it is according to their own personal experience. If someone has primarily a mold sensitivity and gets well by avoidance then it would seem that they may not have what everyone else had in Incline Village, as has stated that none of the original epidemic population has recovered. How does this equate with playing this Incline Village prototype for CFS and being in this constant frenzy about defending the name CFS and trying to prove one's own version. It seems disingenuous and rather odd under the circumstances. Jill > Jill. You have carried on this " frenzy " of attacking me for " defending CFS " for several years now. The events regarding the origin of CFS have been well documented and are easily verifiable. Your assertions of " disingenuous " are themselves demonstrable to be disingenuous. The illness happened exactly as we described and was named CFS. No matter what damage has been done by any of the names involved, or how much you dislike what has already happened - you cannot change events long past or discount them, claiming that they should not have happened. It doesn't seem to bother you that your constant statements that " CFS is fatigue " are in total support and agreement with deniers and denigrators of the illness, and do not serve the purpose of people who are attempting to have " CFS " recognized to the extent necessary that this serious and disabling illness can get the credibility it needs to garner research and a serious medical name. You are fond of telling me that I am spreading " disengenuous lies " for " defending CFS " , yet strangely you fail to mention that this also means that Dr Cheney, , and the authors of the Canadian Guidelines must also be spreading disingenuous lies - if they they share my views that CFS happened as we all said. Is CFS meaningful to you when they say it - but " disingenuous " when I do? In your desire to undo the damage you blame strictly on the name " CFS " instead of those who have always fought the illness, no matter WHAT name it went under, you have become a worse attacker of CFS than Wessely or even the most stalwart disbelievers. Your efforts to " advocate " for CFS by attempting to spread the view that CFS is nothing more than a hodgepodge of meaningless complaints, that CFSers are to blame for the name because they didn't beg the CDC hard enough for change it, and that doctors are correct to ignore immunological abnormalities in their patients and are perfectly right to believe only believe what they read in media and medical journals is a tactic that should earn your own reward and obtain for you just exactly what you deserve - should things turn out the way you ask. Simply apply that same trust in doctors and the CDC's handling of ME and see what you get! You don't even have a clear idea of what you are begging the CDC for. More funding for CFS? More research? A better name? No, that can't be it. Since you espouse the view that " CFS is fatigue " , it is consequent that you would ask the CDC that CFS be de-funded and that no recognition be accorded and no research be performed. Since you have the view that " CFS is not ME " , you cannot ask the CDC to change the name of CFS to ME. What name is it that you wish to " change " , if CFS does not represent any illness? Have you told everyone who signed that name change petition that they cannot ask for a name change because in your view. " CFS is not ME. It has been proven " . Bottom line is that all you are doing in these groups is saying that CFS doesn't exist. Your ridiculous view has no possibility to prevail against the evidence of immune abnormalities in CFS, yet you seem unable to reconcile or even recognize the untenable conflictory nature of your beliefs and assertions. But in the meantime, I invite you be " productive " and beg, supplicate, petition and beseech the CDC for that mysterious name change you refer to, - from what? to what?. And be sure to mention that " CFS is fatigue " and doesn't represent anything that needs a better name, while you are at it. The harder you try to maintain self-contradictory positions - the more of a statement about your mental processes it makes. While you're busy doing that, I will continue on with the " false and disingenuous lies " notion that CFS is what the original describers: Dr Cheney and Dr said it is, and that distortions that came later are precisely that: Distortions! You cannot change that either, except in the depths of your own twisted and convoluted mind. The original intent of the CFS study group was to outline a loose definition to help doctors identify the concurrent complaints which constitute a phenemonen which needed further research to delineate. Instead of using CFS as the tool it was meant to be, YOU denialist chose to use it against sufferers by claiming that whatever was in that definition was the sum total of the illness - for your own twisted, and frankly, psychotic and anti-patient reasons. You and Wessely have your own " fatigue " and " heterogeneous " versions which you have picked over and made up to suit yourselves, long after the fact, but only those who were in the original study group which was used to define CFS can say that whatever the illness turns out to be, were present at the true basis and origin of CFS, no matter how much you happen to dislike the facts. All you did was hear " CFS " somewhere and create your own conviction that you know what it is, based on your own deliberately distorted misinterpretation of nonPWC expressed definitions and later descriptions that have been filtered through layers of misunderstanding created by denialists and obfusticators, such as yourself. Whatever the motivation was behind creation of the name " CFS " , we are the ones the term was invented for - and if anyone associates CFS with " Yuppie Flu " or Incine Village, then they are comparing against the phenomenon of which I have personal knowledge and experience. It is the original CFS that I describe. And NOT whatever YOU choose to think CFS is. You cannot alter that, unless you figure out a way to go back in time and change history. As for the mycotoxin mediation of symptoms, you will notice that I don't try to force it down anyones throats. It has been made clear to me that nobody is interested, so I leave it up to them whether they wish to pursue the clues I've put out. When I had no other options and nothing else had helped in any significant way - I found something that made a difference. When Dr Cheney asked to volunteer to be a participant the CDC study group to define CFS - he demanded that I must be in the group because " You are the purest case of illness and a member of the original cohort " . Dr re-affirmed this 1997 during the ampligen protocols and again when I was in the NIH 1999 " Original CFS cohort study " . You cannot accuse me of being a mistake without implicitly contradicting Dr Cheney and Dr s judgment and decision to include me as a prototypical case of the phenomenon. I walked out of the ampligen screening protocol and recovered to the extent I did by doing exactly what I say I did by doing something that other people have not tried. If you don't like a CFS original performing a demonstration of some level of recovery by a proposed concerted strategy while in an NIH study program... If you are desperately attempting to avoid find something that might make a difference... Tough! - For you! Your actions are rather odd, under the circumstances. Perhaps study of your brain might yield some answers as to why a large percentage of the population responds to novel concepts and unfamiliar phenomenon with automatic disbelief, disdain and denial. Even if it is not to their benefit to do so. My agenda was to gain the attention of some serious researcher into the mycotoxin connection to CFS and I have succeeded - despite the total unwillingness of CFSers to support me in this venture. The evidence I have to date is that CFSers decision to belittle my story and undermine my efforts to draw attention to this abnormality to the CFS illness model is one that many will regret someday. Biotoxin mediation is reality. In the future, your reaction to my experience may well serve as a cautionary example of how the purest arrogance is to be found in those who pre-emptively dismiss information which was later found to be factual, simply because they consider that anyone who challenges the status quo is presumptuous and " arrogant " for daring to act beyond the boundaries of their status - regardless of the inherent truth or falsity of the information involved. As a Holmes et al participant, it was MY blood, symptoms, immune abnormalities and illness that directly received the term " CFS " . Who has more right or better credentials to say they know a thing or two about CFS in it's original form at the time of its naming than someone who was there? If I say that I found something that helped me, and was a factor in what happened in Incline Village, your eagerness to disregard and suppress it before you even find out if I'm mistaken or lying makes your obstinate, intransigent and closed mindset exemplary of those who fight to destroy sufferers of CFS without examining the facts. If one looks beyond the words used by denialists to find the underlying reasons why words just don't work with some people, they will find a certain type of mentality. Your mentality. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Anybody who can write that long a diatribe cannot be real sick. Guess its just time to put you back on blocked, where you were until I had to reformat my harddrive. How rude selfish and disrespectful you are to the rest of us, dumping your load here where it doesn't belong. Adrienne Re: CFS hypothesis development news Jill McLaughlin < wrote: > A good deal of what everyone has been through is to a large degree due to what continues to ignore and excuse. Perhaps the real " CFS deniers " are those who fail to recognize the damage that the name and overly broad, non-specific definition have caused, which has been proven. Blaming drs and making them the scapegoats may be emotionally satisfying to some but is not productive. Misguided and misdirected anger, especially when based on erroneous and unsupportable personal beliefs, can be dangerous and detract from productive issues. Drs believe what they read in journals and media articles about CFS - and " chronic fatigue " and act accordingly. CFS is heterogeneous by definition and not what anyone believes it is according to their own personal experience. If someone has primarily a mold sensitivity and gets well by avoidance then it would seem that they may not have what everyone else had in Incline Village, as has stated that none of the original epidemic population has recovered. How does this equate with playing this Incline Village prototype for CFS and being in this constant frenzy about defending the name CFS and trying to prove one's own version. It seems disingenuous and rather odd under the circumstances. Jill > Jill. You have carried on this " frenzy " of attacking me for " defending CFS " for several years now. The events regarding the origin of CFS have been well documented and are easily verifiable. Your assertions of " disingenuous " are themselves demonstrable to be disingenuous. The illness happened exactly as we described and was named CFS. No matter what damage has been done by any of the names involved, or how much you dislike what has already happened - you cannot change events long past or discount them, claiming that they should not have happened. It doesn't seem to bother you that your constant statements that " CFS is fatigue " are in total support and agreement with deniers and denigrators of the illness, and do not serve the purpose of people who are attempting to have " CFS " recognized to the extent necessary that this serious and disabling illness can get the credibility it needs to garner research and a serious medical name. You are fond of telling me that I am spreading " disengenuous lies " for " defending CFS " , yet strangely you fail to mention that this also means that Dr Cheney, , and the authors of the Canadian Guidelines must also be spreading disingenuous lies - if they they share my views that CFS happened as we all said. Is CFS meaningful to you when they say it - but " disingenuous " when I do? In your desire to undo the damage you blame strictly on the name " CFS " instead of those who have always fought the illness, no matter WHAT name it went under, you have become a worse attacker of CFS than Wessely or even the most stalwart disbelievers. Your efforts to " advocate " for CFS by attempting to spread the view that CFS is nothing more than a hodgepodge of meaningless complaints, that CFSers are to blame for the name because they didn't beg the CDC hard enough for change it, and that doctors are correct to ignore immunological abnormalities in their patients and are perfectly right to believe only believe what they read in media and medical journals is a tactic that should earn your own reward and obtain for you just exactly what you deserve - should things turn out the way you ask. Simply apply that same trust in doctors and the CDC's handling of ME and see what you get! You don't even have a clear idea of what you are begging the CDC for. More funding for CFS? More research? A better name? No, that can't be it. Since you espouse the view that " CFS is fatigue " , it is consequent that you would ask the CDC that CFS be de-funded and that no recognition be accorded and no research be performed. Since you have the view that " CFS is not ME " , you cannot ask the CDC to change the name of CFS to ME. What name is it that you wish to " change " , if CFS does not represent any illness? Have you told everyone who signed that name change petition that they cannot ask for a name change because in your view. " CFS is not ME. It has been proven " . Bottom line is that all you are doing in these groups is saying that CFS doesn't exist. Your ridiculous view has no possibility to prevail against the evidence of immune abnormalities in CFS, yet you seem unable to reconcile or even recognize the untenable conflictory nature of your beliefs and assertions. But in the meantime, I invite you be " productive " and beg, supplicate, petition and beseech the CDC for that mysterious name change you refer to, - from what? to what?. And be sure to mention that " CFS is fatigue " and doesn't represent anything that needs a better name, while you are at it. The harder you try to maintain self-contradictory positions - the more of a statement about your mental processes it makes. While you're busy doing that, I will continue on with the " false and disingenuous lies " notion that CFS is what the original describers: Dr Cheney and Dr said it is, and that distortions that came later are precisely that: Distortions! You cannot change that either, except in the depths of your own twisted and convoluted mind. The original intent of the CFS study group was to outline a loose definition to help doctors identify the concurrent complaints which constitute a phenemonen which needed further research to delineate. Instead of using CFS as the tool it was meant to be, YOU denialist chose to use it against sufferers by claiming that whatever was in that definition was the sum total of the illness - for your own twisted, and frankly, psychotic and anti-patient reasons. You and Wessely have your own " fatigue " and " heterogeneous " versions which you have picked over and made up to suit yourselves, long after the fact, but only those who were in the original study group which was used to define CFS can say that whatever the illness turns out to be, were present at the true basis and origin of CFS, no matter how much you happen to dislike the facts. All you did was hear " CFS " somewhere and create your own conviction that you know what it is, based on your own deliberately distorted misinterpretation of nonPWC expressed definitions and later descriptions that have been filtered through layers of misunderstanding created by denialists and obfusticators, such as yourself. Whatever the motivation was behind creation of the name " CFS " , we are the ones the term was invented for - and if anyone associates CFS with " Yuppie Flu " or Incine Village, then they are comparing against the phenomenon of which I have personal knowledge and experience. It is the original CFS that I describe. And NOT whatever YOU choose to think CFS is. You cannot alter that, unless you figure out a way to go back in time and change history. As for the mycotoxin mediation of symptoms, you will notice that I don't try to force it down anyones throats. It has been made clear to me that nobody is interested, so I leave it up to them whether they wish to pursue the clues I've put out. When I had no other options and nothing else had helped in any significant way - I found something that made a difference. When Dr Cheney asked to volunteer to be a participant the CDC study group to define CFS - he demanded that I must be in the group because " You are the purest case of illness and a member of the original cohort " . Dr re-affirmed this 1997 during the ampligen protocols and again when I was in the NIH 1999 " Original CFS cohort study " . You cannot accuse me of being a mistake without implicitly contradicting Dr Cheney and Dr s judgment and decision to include me as a prototypical case of the phenomenon. I walked out of the ampligen screening protocol and recovered to the extent I did by doing exactly what I say I did by doing something that other people have not tried. If you don't like a CFS original performing a demonstration of some level of recovery by a proposed concerted strategy while in an NIH study program... If you are desperately attempting to avoid find something that might make a difference... Tough! - For you! Your actions are rather odd, under the circumstances. Perhaps study of your brain might yield some answers as to why a large percentage of the population responds to novel concepts and unfamiliar phenomenon with automatic disbelief, disdain and denial. Even if it is not to their benefit to do so. My agenda was to gain the attention of some serious researcher into the mycotoxin connection to CFS and I have succeeded - despite the total unwillingness of CFSers to support me in this venture. The evidence I have to date is that CFSers decision to belittle my story and undermine my efforts to draw attention to this abnormality to the CFS illness model is one that many will regret someday. Biotoxin mediation is reality. In the future, your reaction to my experience may well serve as a cautionary example of how the purest arrogance is to be found in those who pre-emptively dismiss information which was later found to be factual, simply because they consider that anyone who challenges the status quo is presumptuous and " arrogant " for daring to act beyond the boundaries of their status - regardless of the inherent truth or falsity of the information involved. As a Holmes et al participant, it was MY blood, symptoms, immune abnormalities and illness that directly received the term " CFS " . Who has more right or better credentials to say they know a thing or two about CFS in it's original form at the time of its naming than someone who was there? If I say that I found something that helped me, and was a factor in what happened in Incline Village, your eagerness to disregard and suppress it before you even find out if I'm mistaken or lying makes your obstinate, intransigent and closed mindset exemplary of those who fight to destroy sufferers of CFS without examining the facts. If one looks beyond the words used by denialists to find the underlying reasons why words just don't work with some people, they will find a certain type of mentality. Your mentality. - This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 >>>Anybody who can write that long a diatribe cannot be real sick.<<<< Just for the record, Jill Mc. is not a patient. > > A good deal of what everyone has been through is to a large degree > due to what continues to ignore and excuse. Perhaps the > real " CFS deniers " are those who fail to recognize the damage that > the name and overly broad, non-specific definition have caused, > which has been proven. Blaming drs and making them the scapegoats > may be emotionally satisfying to some but is not productive. > Misguided and misdirected anger, especially when based on erroneous > and unsupportable personal beliefs, can be dangerous and detract > from productive issues. Drs believe what they read in journals and > media articles about CFS - and " chronic fatigue " and act > accordingly. CFS is heterogeneous by definition and not what anyone > believes it is according to their own personal experience. If > someone has primarily a mold sensitivity and gets well by avoidance > then it would seem that they may not have what everyone else had in > Incline Village, as has stated that none of the original > epidemic population has recovered. How does this equate with playing > this Incline Village prototype for CFS and being in this constant > frenzy about defending the name CFS and trying to prove one's own > version. > It seems disingenuous and rather odd under the circumstances. > Jill > > > > Jill. > You have carried on this " frenzy " of attacking me for " defending > CFS " for several years now. > The events regarding the origin of CFS have been well documented and > are easily verifiable. Your assertions of " disingenuous " are > themselves demonstrable to be disingenuous. > The illness happened exactly as we described and was named CFS. > No matter what damage has been done by any of the names involved, > or how much you dislike what has already happened - you cannot > change events long past or discount them, claiming that they should > not have happened. > It doesn't seem to bother you that your constant statements > that " CFS is fatigue " are in total support and agreement with > deniers and denigrators of the illness, and do not serve the purpose > of people who are attempting to have " CFS " recognized to the extent > necessary that this serious and disabling illness can get the > credibility it needs to garner research and a serious medical name. > You are fond of telling me that I am spreading " disengenuous lies " > for " defending CFS " , yet strangely you fail to mention that this > also means that Dr Cheney, , and the authors of the Canadian > Guidelines must also be spreading disingenuous lies - if they they > share my views that CFS happened as we all said. Is CFS meaningful > to you when they say it - but " disingenuous " when I do? > In your desire to undo the damage you blame strictly on the > name " CFS " instead of those who have always fought the illness, no > matter WHAT name it went under, you have become a worse attacker of > CFS than Wessely or even the most stalwart disbelievers. > Your efforts to " advocate " for CFS by attempting to spread the view > that CFS is nothing more than a hodgepodge of meaningless > complaints, that CFSers are to blame for the name because they > didn't beg the CDC hard enough for change it, and that doctors are > correct to ignore immunological abnormalities in their patients and > are perfectly right to believe only believe what they read in media > and medical journals is a tactic that should earn your own reward > and obtain for you just exactly what you deserve - should things > turn out the way you ask. Simply apply that same trust in doctors > and the CDC's handling of ME and see what you get! > > You don't even have a clear idea of what you are begging the CDC > for. More funding for CFS? More research? A better name? > No, that can't be it. > Since you espouse the view that " CFS is fatigue " , it is consequent > that you would ask the CDC that CFS be de-funded and that no > recognition be accorded and no research be performed. > Since you have the view that " CFS is not ME " , you cannot ask the > CDC to change the name of CFS to ME. > What name is it that you wish to " change " , if CFS does not represent > any illness? > Have you told everyone who signed that name change petition that > they cannot ask for a name change because in your view. " CFS is not > ME. It has been proven " . > Bottom line is that all you are doing in these groups is saying that > CFS doesn't exist. > Your ridiculous view has no possibility to prevail against the > evidence of immune abnormalities in CFS, yet you seem unable to > reconcile or even recognize the untenable conflictory nature of your > beliefs and assertions. > > > But in the meantime, I invite you be " productive " and beg, > supplicate, petition and beseech the CDC for that mysterious name > change you refer to, - from what? to what?. And be sure to mention > that " CFS is fatigue " and doesn't represent anything that needs a > better name, while you are at it. > The harder you try to maintain self-contradictory positions - the > more of a statement about your mental processes it makes. > > While you're busy doing that, I will continue on with the " false > and disingenuous lies " notion that CFS is what the original > describers: Dr Cheney and Dr said it is, and that > distortions that came later are precisely that: > Distortions! > You cannot change that either, except in the depths of your own > twisted and convoluted mind. > The original intent of the CFS study group was to outline a loose > definition to help doctors identify the concurrent complaints which > constitute a phenemonen which needed further research to delineate. > Instead of using CFS as the tool it was meant to be, YOU denialist > chose to use it against sufferers by claiming that whatever was in > that definition was the sum total of the illness - for your own > twisted, and frankly, psychotic and anti-patient reasons. > You and Wessely have your own " fatigue " and " heterogeneous " > versions which you have picked over and made up to suit yourselves, > long after the fact, but only those who were in the original study > group which was used to define CFS can say that whatever the > illness turns out to be, were present at the true basis and origin > of CFS, no matter how much you happen to dislike the facts. > All you did was hear " CFS " somewhere and create your own conviction > that you know what it is, based on your own deliberately distorted > misinterpretation of nonPWC expressed definitions and later > descriptions that have been filtered through layers of > misunderstanding created by denialists and obfusticators, such as > yourself. > Whatever the motivation was behind creation of the name " CFS " , we > are the ones the term was invented for - and if anyone associates > CFS with " Yuppie Flu " or Incine Village, then they are comparing > against the phenomenon of which I have personal knowledge and > experience. > It is the original CFS that I describe. > And NOT whatever YOU choose to think CFS is. > You cannot alter that, unless you figure out a way to go back in > time and change history. > > > As for the mycotoxin mediation of symptoms, you will notice that I > don't try to force it down anyones throats. > It has been made clear to me that nobody is interested, so I leave > it up to them whether they wish to pursue the clues I've put out. > When I had no other options and nothing else had helped in any > significant way - I found something that made a difference. > When Dr Cheney asked to volunteer to be a participant the CDC > study group to define CFS - he demanded that I must be in the group > because " You are the purest case of illness and a member of the > original cohort " . > Dr re-affirmed this 1997 during the ampligen protocols and > again when I was in the NIH 1999 " Original CFS cohort study " . > You cannot accuse me of being a mistake without implicitly > contradicting Dr Cheney and Dr s judgment and decision to > include me as a prototypical case of the phenomenon. > I walked out of the ampligen screening protocol and recovered to > the extent I did by doing exactly what I say I did by doing > something that other people have not tried. If you don't like a CFS > original performing a demonstration of some level of recovery by a > proposed concerted strategy while in an NIH study program... > If you are desperately attempting to avoid find something that might > make a difference... > Tough! - For you! > Your actions are rather odd, under the circumstances. > Perhaps study of your brain might yield some answers as to why a > large percentage of the population responds to novel concepts and > unfamiliar phenomenon with automatic disbelief, disdain and denial. > Even if it is not to their benefit to do so. > > My agenda was to gain the attention of some serious researcher into > the mycotoxin connection to CFS and I have succeeded - despite the > total unwillingness of CFSers to support me in this venture. > The evidence I have to date is that CFSers decision to belittle my > story and undermine my efforts to draw attention to this abnormality > to the CFS illness model is one that many will regret someday. > Biotoxin mediation is reality. > In the future, your reaction to my experience may well serve as a > cautionary example of how the purest arrogance is to be found in > those who pre-emptively dismiss information which was later found to > be factual, simply because they consider that anyone who challenges > the status quo is presumptuous and " arrogant " for daring to act > beyond the boundaries of their status - regardless of the inherent > truth or falsity of the information involved. > > As a Holmes et al participant, it was MY blood, symptoms, immune > abnormalities and illness that directly received the term " CFS " . > > Who has more right or better credentials to say they know a thing or > two about CFS in it's original form at the time of its naming than > someone who was there? > If I say that I found something that helped me, and was a factor in > what happened in Incline Village, your eagerness to disregard and > suppress it before you even find out if I'm mistaken or lying makes > your obstinate, intransigent and closed mindset exemplary of those > who fight to destroy sufferers of CFS without examining the facts. > If one looks beyond the words used by denialists to find the > underlying reasons why words just don't work with some people, they > will find a certain type of mentality. > Your mentality. > > - > > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Um. Adrienne, is not very sick. That is part of his whole point. You have missed his entire point. So has Jill. He is a classic case of cfs. He controls his disease by avoiding toxic mold. If you chose to block that piece of valuable information, as does Jill, this is your loss, not 's. He is the one out skydving and climbing Mt Ranier, after all. a Carnes Anybody who can write that long a diatribe cannot be real sick. Guess its just time to put you back on blocked, where you were until I had to reformat my harddrive. How rude selfish and disrespectful you are to the rest of us, dumping your load here where it doesn't belong. Adrienne Re: CFS hypothesis development news Jill McLaughlin < wrote: > A good deal of what everyone has been through is to a large degree due to what continues to ignore and excuse. Perhaps the real " CFS deniers " are those who fail to recognize the damage that the name and overly broad, non-specific definition have caused, which has been proven. Blaming drs and making them the scapegoats may be emotionally satisfying to some but is not productive. Misguided and misdirected anger, especially when based on erroneous and unsupportable personal beliefs, can be dangerous and detract from productive issues. Drs believe what they read in journals and media articles about CFS - and " chronic fatigue " and act accordingly. CFS is heterogeneous by definition and not what anyone believes it is according to their own personal experience. If someone has primarily a mold sensitivity and gets well by avoidance then it would seem that they may not have what everyone else had in Incline Village, as has stated that none of the original epidemic population has recovered. How does this equate with playing this Incline Village prototype for CFS and being in this constant frenzy about defending the name CFS and trying to prove one's own version. It seems disingenuous and rather odd under the circumstances. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 I am appealing to the list manager: PLEASE make these two take it offlist NOW. I've already put up with enough of their crankiness elsewhere, and will take a hiatus from this list if they are not made to STOP IT by the end of the day. I'm simply not going to put up with it, and none of the rest of you should, either. Sara On Jul 11, 2006, at 11:07 PM, erikmoldwarrior wrote: > Jill McLaughlin < wrote: >> A good deal of what everyone has been through is to a large degree > due to what continues to ignore and excuse. Perhaps the > real " CFS deniers " are those who fail to recognize the damage that > the name and overly broad, non-specific definition have caused, > which has been proven. Blaming drs and making them the scapegoats > may be emotionally satisfying to some but is not productive. > Misguided and misdirected anger, especially when based on erroneous > and unsupportable personal beliefs, can be dangerous and detract > from productive issues. Drs believe what they read in journals and > media articles about CFS - and " chronic fatigue " and act > accordingly. CFS is heterogeneous by definition and not what anyone > believes it is according to their own personal experience. If > someone has primarily a mold sensitivity and gets well by avoidance > then it would seem that they may not have what everyone else had in > Incline Village, as has stated that none of the original > epidemic population has recovered. How does this equate with playing > this Incline Village prototype for CFS and being in this constant > frenzy about defending the name CFS and trying to prove one's own > version. > It seems disingenuous and rather odd under the circumstances. > Jill >> > > Jill. > You have carried on this " frenzy " of attacking me for " defending > CFS " for several years now. > The events regarding the origin of CFS have been well documented and > are easily verifiable. Your assertions of " disingenuous " are > themselves demonstrable to be disingenuous. > The illness happened exactly as we described and was named CFS. > No matter what damage has been done by any of the names involved, > or how much you dislike what has already happened - you cannot > change events long past or discount them, claiming that they should > not have happened. > It doesn't seem to bother you that your constant statements > that " CFS is fatigue " are in total support and agreement with > deniers and denigrators of the illness, and do not serve the purpose > of people who are attempting to have " CFS " recognized to the extent > necessary that this serious and disabling illness can get the > credibility it needs to garner research and a serious medical name. > You are fond of telling me that I am spreading " disengenuous lies " > for " defending CFS " , yet strangely you fail to mention that this > also means that Dr Cheney, , and the authors of the Canadian > Guidelines must also be spreading disingenuous lies - if they they > share my views that CFS happened as we all said. Is CFS meaningful > to you when they say it - but " disingenuous " when I do? > In your desire to undo the damage you blame strictly on the > name " CFS " instead of those who have always fought the illness, no > matter WHAT name it went under, you have become a worse attacker of > CFS than Wessely or even the most stalwart disbelievers. > Your efforts to " advocate " for CFS by attempting to spread the view > that CFS is nothing more than a hodgepodge of meaningless > complaints, that CFSers are to blame for the name because they > didn't beg the CDC hard enough for change it, and that doctors are > correct to ignore immunological abnormalities in their patients and > are perfectly right to believe only believe what they read in media > and medical journals is a tactic that should earn your own reward > and obtain for you just exactly what you deserve - should things > turn out the way you ask. Simply apply that same trust in doctors > and the CDC's handling of ME and see what you get! > > You don't even have a clear idea of what you are begging the CDC > for. More funding for CFS? More research? A better name? > No, that can't be it. > Since you espouse the view that " CFS is fatigue " , it is consequent > that you would ask the CDC that CFS be de-funded and that no > recognition be accorded and no research be performed. > Since you have the view that " CFS is not ME " , you cannot ask the > CDC to change the name of CFS to ME. > What name is it that you wish to " change " , if CFS does not represent > any illness? > Have you told everyone who signed that name change petition that > they cannot ask for a name change because in your view. " CFS is not > ME. It has been proven " . > Bottom line is that all you are doing in these groups is saying that > CFS doesn't exist. > Your ridiculous view has no possibility to prevail against the > evidence of immune abnormalities in CFS, yet you seem unable to > reconcile or even recognize the untenable conflictory nature of your > beliefs and assertions. > > > But in the meantime, I invite you be " productive " and beg, > supplicate, petition and beseech the CDC for that mysterious name > change you refer to, - from what? to what?. And be sure to mention > that " CFS is fatigue " and doesn't represent anything that needs a > better name, while you are at it. > The harder you try to maintain self-contradictory positions - the > more of a statement about your mental processes it makes. > > While you're busy doing that, I will continue on with the " false > and disingenuous lies " notion that CFS is what the original > describers: Dr Cheney and Dr said it is, and that > distortions that came later are precisely that: > Distortions! > You cannot change that either, except in the depths of your own > twisted and convoluted mind. > The original intent of the CFS study group was to outline a loose > definition to help doctors identify the concurrent complaints which > constitute a phenemonen which needed further research to delineate. > Instead of using CFS as the tool it was meant to be, YOU denialist > chose to use it against sufferers by claiming that whatever was in > that definition was the sum total of the illness - for your own > twisted, and frankly, psychotic and anti-patient reasons. > You and Wessely have your own " fatigue " and " heterogeneous " > versions which you have picked over and made up to suit yourselves, > long after the fact, but only those who were in the original study > group which was used to define CFS can say that whatever the > illness turns out to be, were present at the true basis and origin > of CFS, no matter how much you happen to dislike the facts. > All you did was hear " CFS " somewhere and create your own conviction > that you know what it is, based on your own deliberately distorted > misinterpretation of nonPWC expressed definitions and later > descriptions that have been filtered through layers of > misunderstanding created by denialists and obfusticators, such as > yourself. > Whatever the motivation was behind creation of the name " CFS " , we > are the ones the term was invented for - and if anyone associates > CFS with " Yuppie Flu " or Incine Village, then they are comparing > against the phenomenon of which I have personal knowledge and > experience. > It is the original CFS that I describe. > And NOT whatever YOU choose to think CFS is. > You cannot alter that, unless you figure out a way to go back in > time and change history. > > > As for the mycotoxin mediation of symptoms, you will notice that I > don't try to force it down anyones throats. > It has been made clear to me that nobody is interested, so I leave > it up to them whether they wish to pursue the clues I've put out. > When I had no other options and nothing else had helped in any > significant way - I found something that made a difference. > When Dr Cheney asked to volunteer to be a participant the CDC > study group to define CFS - he demanded that I must be in the group > because " You are the purest case of illness and a member of the > original cohort " . > Dr re-affirmed this 1997 during the ampligen protocols and > again when I was in the NIH 1999 " Original CFS cohort study " . > You cannot accuse me of being a mistake without implicitly > contradicting Dr Cheney and Dr s judgment and decision to > include me as a prototypical case of the phenomenon. > I walked out of the ampligen screening protocol and recovered to > the extent I did by doing exactly what I say I did by doing > something that other people have not tried. If you don't like a CFS > original performing a demonstration of some level of recovery by a > proposed concerted strategy while in an NIH study program... > If you are desperately attempting to avoid find something that might > make a difference... > Tough! - For you! > Your actions are rather odd, under the circumstances. > Perhaps study of your brain might yield some answers as to why a > large percentage of the population responds to novel concepts and > unfamiliar phenomenon with automatic disbelief, disdain and denial. > Even if it is not to their benefit to do so. > > My agenda was to gain the attention of some serious researcher into > the mycotoxin connection to CFS and I have succeeded - despite the > total unwillingness of CFSers to support me in this venture. > The evidence I have to date is that CFSers decision to belittle my > story and undermine my efforts to draw attention to this abnormality > to the CFS illness model is one that many will regret someday. > Biotoxin mediation is reality. > In the future, your reaction to my experience may well serve as a > cautionary example of how the purest arrogance is to be found in > those who pre-emptively dismiss information which was later found to > be factual, simply because they consider that anyone who challenges > the status quo is presumptuous and " arrogant " for daring to act > beyond the boundaries of their status - regardless of the inherent > truth or falsity of the information involved. > > As a Holmes et al participant, it was MY blood, symptoms, immune > abnormalities and illness that directly received the term " CFS " . > > Who has more right or better credentials to say they know a thing or > two about CFS in it's original form at the time of its naming than > someone who was there? > If I say that I found something that helped me, and was a factor in > what happened in Incline Village, your eagerness to disregard and > suppress it before you even find out if I'm mistaken or lying makes > your obstinate, intransigent and closed mindset exemplary of those > who fight to destroy sufferers of CFS without examining the facts. > If one looks beyond the words used by denialists to find the > underlying reasons why words just don't work with some people, they > will find a certain type of mentality. > Your mentality. > > - > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 For the record, Katrina, no I am not a patient but I have sick children, which anyone who has children would realize that I have more at stake. And for the record, I didn't write this diatribe, did. He repeatedly misrepresents what I have said and makes up his own versions and do not want to waste time correcting the same things over and over. He is not being attacked, just playing the attack card. We can all read the CFS def, it is not what I say it is. Or what says it is, which is apparently incomprehensible to him. Whatever the original intent of CFS was or why, it has not served patients well. stated: > As a Holmes et al participant, it was MY blood, symptoms, immune > abnormalities and illness that directly received the term " CFS " . Would not consider this as something to brag about as CDC hardly has a handle on the illness. This may simply be unfortunate for the rest of us. As I said, has said that no one from the initial outbreak has gotten well yet he apparently has. If is out skydiving and mt climbing then perhaps he does not have what the rest of the those patients have. So why is he the one that (he claims) CDC chose as the prototype? Cheney and didn't name or define it so is nothing against them. My disdain for the CFS label and construct of the illness is hardly unique - I am in good company. seems to be a party of one who defends and accepts it. Mainly I am tired of his incessant angry, rude, emotional rants. Jill ___________________________ Re: CFS hypothesis development news Posted by: " kattemayo " kattemayo@... <mailto:kattemayo@...?Subject= Re%3A%20CFS%20hypothesis%20development%20news> kattemayo <kattemayo> Wed Jul 12, 2006 12:52 am (PST) >>>Anybody who can write that long a diatribe cannot be real sick.<<<< Just for the record, Jill Mc. is not a patient. > > A good deal of what everyone has been through is to a large degree > due to what continues to ignore and excuse. Perhaps the > real " CFS deniers " are those who fail to recognize the damage that > the name and overly broad, non-specific definition have caused, > which has been proven. Blaming drs and making them the scapegoats > may be emotionally satisfying to some but is not productive. > Misguided and misdirected anger, especially when based on erroneous > and unsupportable personal beliefs, can be dangerous and detract > from productive issues. Drs believe what they read in journals and > media articles about CFS - and " chronic fatigue " and act > accordingly. CFS is heterogeneous by definition and not what anyone > believes it is according to their own personal experience. If > someone has primarily a mold sensitivity and gets well by avoidance > then it would seem that they may not have what everyone else had in > Incline Village, as has stated that none of the original > epidemic population has recovered. How does this equate with playing > this Incline Village prototype for CFS and being in this constant > frenzy about defending the name CFS and trying to prove one's own > version. > It seems disingenuous and rather odd under the circumstances. > Jill > > > > Jill. > You have carried on this " frenzy " of attacking me for " defending > CFS " for several years now. > The events regarding the origin of CFS have been well documented and > are easily verifiable. Your assertions of " disingenuous " are > themselves demonstrable to be disingenuous. > The illness happened exactly as we described and was named CFS. > No matter what damage has been done by any of the names involved, > or how much you dislike what has already happened - you cannot > change events long past or discount them, claiming that they should > not have happened. > It doesn't seem to bother you that your constant statements > that " CFS is fatigue " are in total support and agreement with > deniers and denigrators of the illness, and do not serve the purpose > of people who are attempting to have " CFS " recognized to the extent > necessary that this serious and disabling illness can get the > credibility it needs to garner research and a serious medical name. > You are fond of telling me that I am spreading " disengenuous lies " > for " defending CFS " , yet strangely you fail to mention that this > also means that Dr Cheney, , and the authors of the Canadian > Guidelines must also be spreading disingenuous lies - if they they > share my views that CFS happened as we all said. Is CFS meaningful > to you when they say it - but " disingenuous " when I do? > In your desire to undo the damage you blame strictly on the > name " CFS " instead of those who have always fought the illness, no > matter WHAT name it went under, you have become a worse attacker of > CFS than Wessely or even the most stalwart disbelievers. > Your efforts to " advocate " for CFS by attempting to spread the view > that CFS is nothing more than a hodgepodge of meaningless > complaints, that CFSers are to blame for the name because they > didn't beg the CDC hard enough for change it, and that doctors are > correct to ignore immunological abnormalities in their patients and > are perfectly right to believe only believe what they read in media > and medical journals is a tactic that should earn your own reward > and obtain for you just exactly what you deserve - should things > turn out the way you ask. Simply apply that same trust in doctors > and the CDC's handling of ME and see what you get! > > You don't even have a clear idea of what you are begging the CDC > for. More funding for CFS? More research? A better name? > No, that can't be it. > Since you espouse the view that " CFS is fatigue " , it is consequent > that you would ask the CDC that CFS be de-funded and that no > recognition be accorded and no research be performed. > Since you have the view that " CFS is not ME " , you cannot ask the > CDC to change the name of CFS to ME. > What name is it that you wish to " change " , if CFS does not represent > any illness? > Have you told everyone who signed that name change petition that > they cannot ask for a name change because in your view. " CFS is not > ME. It has been proven " . > Bottom line is that all you are doing in these groups is saying that > CFS doesn't exist. > Your ridiculous view has no possibility to prevail against the > evidence of immune abnormalities in CFS, yet you seem unable to > reconcile or even recognize the untenable conflictory nature of your > beliefs and assertions. > > > But in the meantime, I invite you be " productive " and beg, > supplicate, petition and beseech the CDC for that mysterious name > change you refer to, - from what? to what?. And be sure to mention > that " CFS is fatigue " and doesn't represent anything that needs a > better name, while you are at it. > The harder you try to maintain self-contradictory positions - the > more of a statement about your mental processes it makes. > > While you're busy doing that, I will continue on with the " false > and disingenuous lies " notion that CFS is what the original > describers: Dr Cheney and Dr said it is, and that > distortions that came later are precisely that: > Distortions! > You cannot change that either, except in the depths of your own > twisted and convoluted mind. > The original intent of the CFS study group was to outline a loose > definition to help doctors identify the concurrent complaints which > constitute a phenemonen which needed further research to delineate. > Instead of using CFS as the tool it was meant to be, YOU denialist > chose to use it against sufferers by claiming that whatever was in > that definition was the sum total of the illness - for your own > twisted, and frankly, psychotic and anti-patient reasons. > You and Wessely have your own " fatigue " and " heterogeneous " > versions which you have picked over and made up to suit yourselves, > long after the fact, but only those who were in the original study > group which was used to define CFS can say that whatever the > illness turns out to be, were present at the true basis and origin > of CFS, no matter how much you happen to dislike the facts. > All you did was hear " CFS " somewhere and create your own conviction > that you know what it is, based on your own deliberately distorted > misinterpretation of nonPWC expressed definitions and later > descriptions that have been filtered through layers of > misunderstanding created by denialists and obfusticators, such as > yourself. > Whatever the motivation was behind creation of the name " CFS " , we > are the ones the term was invented for - and if anyone associates > CFS with " Yuppie Flu " or Incine Village, then they are comparing > against the phenomenon of which I have personal knowledge and > experience. > It is the original CFS that I describe. > And NOT whatever YOU choose to think CFS is. > You cannot alter that, unless you figure out a way to go back in > time and change history. > > > As for the mycotoxin mediation of symptoms, you will notice that I > don't try to force it down anyones throats. > It has been made clear to me that nobody is interested, so I leave > it up to them whether they wish to pursue the clues I've put out. > When I had no other options and nothing else had helped in any > significant way - I found something that made a difference. > When Dr Cheney asked to volunteer to be a participant the CDC > study group to define CFS - he demanded that I must be in the group > because " You are the purest case of illness and a member of the > original cohort " . > Dr re-affirmed this 1997 during the ampligen protocols and > again when I was in the NIH 1999 " Original CFS cohort study " . > You cannot accuse me of being a mistake without implicitly > contradicting Dr Cheney and Dr s judgment and decision to > include me as a prototypical case of the phenomenon. > I walked out of the ampligen screening protocol and recovered to > the extent I did by doing exactly what I say I did by doing > something that other people have not tried. If you don't like a CFS > original performing a demonstration of some level of recovery by a > proposed concerted strategy while in an NIH study program... > If you are desperately attempting to avoid find something that might > make a difference... > Tough! - For you! > Your actions are rather odd, under the circumstances. > Perhaps study of your brain might yield some answers as to why a > large percentage of the population responds to novel concepts and > unfamiliar phenomenon with automatic disbelief, disdain and denial. > Even if it is not to their benefit to do so. > > My agenda was to gain the attention of some serious researcher into > the mycotoxin connection to CFS and I have succeeded - despite the > total unwillingness of CFSers to support me in this venture. > The evidence I have to date is that CFSers decision to belittle my > story and undermine my efforts to draw attention to this abnormality > to the CFS illness model is one that many will regret someday. > Biotoxin mediation is reality. > In the future, your reaction to my experience may well serve as a > cautionary example of how the purest arrogance is to be found in > those who pre-emptively dismiss information which was later found to > be factual, simply because they consider that anyone who challenges > the status quo is presumptuous and " arrogant " for daring to act > beyond the boundaries of their status - regardless of the inherent > truth or falsity of the information involved. > > As a Holmes et al participant, it was MY blood, symptoms, immune > abnormalities and illness that directly received the term " CFS " . > > Who has more right or better credentials to say they know a thing or > two about CFS in it's original form at the time of its naming than > someone who was there? > If I say that I found something that helped me, and was a factor in > what happened in Incline Village, your eagerness to disregard and > suppress it before you even find out if I'm mistaken or lying makes > your obstinate, intransigent and closed mindset exemplary of those > who fight to destroy sufferers of CFS without examining the facts. > If one looks beyond the words used by denialists to find the > underlying reasons why words just don't work with some people, they > will find a certain type of mentality. > Your mentality. > > - > > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Write Ken privately, Sara. I did that at one point when Penny was on here relentlessly posting about intractable jaw infections and saying nothing new was happening on the list, when in fact, new things were happening. A private appeal is better. Good luck...lately the list has seemed to get a bit off base, with too much argument over EMF's for instance. I didn't really mind this last exchange too much myself, I try to scroll on by unless it really gets to me. > >> A good deal of what everyone has been through is to a large degree > > due to what continues to ignore and excuse. Perhaps the > > real " CFS deniers " are those who fail to recognize the damage that > > the name and overly broad, non-specific definition have caused, > > which has been proven. Blaming drs and making them the scapegoats > > may be emotionally satisfying to some but is not productive. > > Misguided and misdirected anger, especially when based on erroneous > > and unsupportable personal beliefs, can be dangerous and detract > > from productive issues. Drs believe what they read in journals and > > media articles about CFS - and " chronic fatigue " and act > > accordingly. CFS is heterogeneous by definition and not what anyone > > believes it is according to their own personal experience. If > > someone has primarily a mold sensitivity and gets well by avoidance > > then it would seem that they may not have what everyone else had in > > Incline Village, as has stated that none of the original > > epidemic population has recovered. How does this equate with playing > > this Incline Village prototype for CFS and being in this constant > > frenzy about defending the name CFS and trying to prove one's own > > version. > > It seems disingenuous and rather odd under the circumstances. > > Jill > >> > > > > Jill. > > You have carried on this " frenzy " of attacking me for " defending > > CFS " for several years now. > > The events regarding the origin of CFS have been well documented and > > are easily verifiable. Your assertions of " disingenuous " are > > themselves demonstrable to be disingenuous. > > The illness happened exactly as we described and was named CFS. > > No matter what damage has been done by any of the names involved, > > or how much you dislike what has already happened - you cannot > > change events long past or discount them, claiming that they should > > not have happened. > > It doesn't seem to bother you that your constant statements > > that " CFS is fatigue " are in total support and agreement with > > deniers and denigrators of the illness, and do not serve the purpose > > of people who are attempting to have " CFS " recognized to the extent > > necessary that this serious and disabling illness can get the > > credibility it needs to garner research and a serious medical name. > > You are fond of telling me that I am spreading " disengenuous lies " > > for " defending CFS " , yet strangely you fail to mention that this > > also means that Dr Cheney, , and the authors of the Canadian > > Guidelines must also be spreading disingenuous lies - if they they > > share my views that CFS happened as we all said. Is CFS meaningful > > to you when they say it - but " disingenuous " when I do? > > In your desire to undo the damage you blame strictly on the > > name " CFS " instead of those who have always fought the illness, no > > matter WHAT name it went under, you have become a worse attacker of > > CFS than Wessely or even the most stalwart disbelievers. > > Your efforts to " advocate " for CFS by attempting to spread the view > > that CFS is nothing more than a hodgepodge of meaningless > > complaints, that CFSers are to blame for the name because they > > didn't beg the CDC hard enough for change it, and that doctors are > > correct to ignore immunological abnormalities in their patients and > > are perfectly right to believe only believe what they read in media > > and medical journals is a tactic that should earn your own reward > > and obtain for you just exactly what you deserve - should things > > turn out the way you ask. Simply apply that same trust in doctors > > and the CDC's handling of ME and see what you get! > > > > You don't even have a clear idea of what you are begging the CDC > > for. More funding for CFS? More research? A better name? > > No, that can't be it. > > Since you espouse the view that " CFS is fatigue " , it is consequent > > that you would ask the CDC that CFS be de-funded and that no > > recognition be accorded and no research be performed. > > Since you have the view that " CFS is not ME " , you cannot ask the > > CDC to change the name of CFS to ME. > > What name is it that you wish to " change " , if CFS does not represent > > any illness? > > Have you told everyone who signed that name change petition that > > they cannot ask for a name change because in your view. " CFS is not > > ME. It has been proven " . > > Bottom line is that all you are doing in these groups is saying that > > CFS doesn't exist. > > Your ridiculous view has no possibility to prevail against the > > evidence of immune abnormalities in CFS, yet you seem unable to > > reconcile or even recognize the untenable conflictory nature of your > > beliefs and assertions. > > > > > > But in the meantime, I invite you be " productive " and beg, > > supplicate, petition and beseech the CDC for that mysterious name > > change you refer to, - from what? to what?. And be sure to mention > > that " CFS is fatigue " and doesn't represent anything that needs a > > better name, while you are at it. > > The harder you try to maintain self-contradictory positions - the > > more of a statement about your mental processes it makes. > > > > While you're busy doing that, I will continue on with the " false > > and disingenuous lies " notion that CFS is what the original > > describers: Dr Cheney and Dr said it is, and that > > distortions that came later are precisely that: > > Distortions! > > You cannot change that either, except in the depths of your own > > twisted and convoluted mind. > > The original intent of the CFS study group was to outline a loose > > definition to help doctors identify the concurrent complaints which > > constitute a phenemonen which needed further research to delineate. > > Instead of using CFS as the tool it was meant to be, YOU denialist > > chose to use it against sufferers by claiming that whatever was in > > that definition was the sum total of the illness - for your own > > twisted, and frankly, psychotic and anti-patient reasons. > > You and Wessely have your own " fatigue " and " heterogeneous " > > versions which you have picked over and made up to suit yourselves, > > long after the fact, but only those who were in the original study > > group which was used to define CFS can say that whatever the > > illness turns out to be, were present at the true basis and origin > > of CFS, no matter how much you happen to dislike the facts. > > All you did was hear " CFS " somewhere and create your own conviction > > that you know what it is, based on your own deliberately distorted > > misinterpretation of nonPWC expressed definitions and later > > descriptions that have been filtered through layers of > > misunderstanding created by denialists and obfusticators, such as > > yourself. > > Whatever the motivation was behind creation of the name " CFS " , we > > are the ones the term was invented for - and if anyone associates > > CFS with " Yuppie Flu " or Incine Village, then they are comparing > > against the phenomenon of which I have personal knowledge and > > experience. > > It is the original CFS that I describe. > > And NOT whatever YOU choose to think CFS is. > > You cannot alter that, unless you figure out a way to go back in > > time and change history. > > > > > > As for the mycotoxin mediation of symptoms, you will notice that I > > don't try to force it down anyones throats. > > It has been made clear to me that nobody is interested, so I leave > > it up to them whether they wish to pursue the clues I've put out. > > When I had no other options and nothing else had helped in any > > significant way - I found something that made a difference. > > When Dr Cheney asked to volunteer to be a participant the CDC > > study group to define CFS - he demanded that I must be in the group > > because " You are the purest case of illness and a member of the > > original cohort " . > > Dr re-affirmed this 1997 during the ampligen protocols and > > again when I was in the NIH 1999 " Original CFS cohort study " . > > You cannot accuse me of being a mistake without implicitly > > contradicting Dr Cheney and Dr s judgment and decision to > > include me as a prototypical case of the phenomenon. > > I walked out of the ampligen screening protocol and recovered to > > the extent I did by doing exactly what I say I did by doing > > something that other people have not tried. If you don't like a CFS > > original performing a demonstration of some level of recovery by a > > proposed concerted strategy while in an NIH study program... > > If you are desperately attempting to avoid find something that might > > make a difference... > > Tough! - For you! > > Your actions are rather odd, under the circumstances. > > Perhaps study of your brain might yield some answers as to why a > > large percentage of the population responds to novel concepts and > > unfamiliar phenomenon with automatic disbelief, disdain and denial. > > Even if it is not to their benefit to do so. > > > > My agenda was to gain the attention of some serious researcher into > > the mycotoxin connection to CFS and I have succeeded - despite the > > total unwillingness of CFSers to support me in this venture. > > The evidence I have to date is that CFSers decision to belittle my > > story and undermine my efforts to draw attention to this abnormality > > to the CFS illness model is one that many will regret someday. > > Biotoxin mediation is reality. > > In the future, your reaction to my experience may well serve as a > > cautionary example of how the purest arrogance is to be found in > > those who pre-emptively dismiss information which was later found to > > be factual, simply because they consider that anyone who challenges > > the status quo is presumptuous and " arrogant " for daring to act > > beyond the boundaries of their status - regardless of the inherent > > truth or falsity of the information involved. > > > > As a Holmes et al participant, it was MY blood, symptoms, immune > > abnormalities and illness that directly received the term " CFS " . > > > > Who has more right or better credentials to say they know a thing or > > two about CFS in it's original form at the time of its naming than > > someone who was there? > > If I say that I found something that helped me, and was a factor in > > what happened in Incline Village, your eagerness to disregard and > > suppress it before you even find out if I'm mistaken or lying makes > > your obstinate, intransigent and closed mindset exemplary of those > > who fight to destroy sufferers of CFS without examining the facts. > > If one looks beyond the words used by denialists to find the > > underlying reasons why words just don't work with some people, they > > will find a certain type of mentality. > > Your mentality. > > > > - > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hi , Thanks for your interesting post. As one of the original people to get the illness that plagued people in Incline Village I am curious if you can tell me how symptoms there were different than the symptoms outlined in 1994 by the CDC which seem to describe what has been termed " yuppie flu " and outline a set of symptoms that a lot of people in Silicon Valley were originally getting at the time? > > A good deal of what everyone has been through is to a large degree > due to what continues to ignore and excuse. Perhaps the > real " CFS deniers " are those who fail to recognize the damage that > the name and overly broad, non-specific definition have caused, > which has been proven. Blaming drs and making them the scapegoats > may be emotionally satisfying to some but is not productive. > Misguided and misdirected anger, especially when based on erroneous > and unsupportable personal beliefs, can be dangerous and detract > from productive issues. Drs believe what they read in journals and > media articles about CFS - and " chronic fatigue " and act > accordingly. CFS is heterogeneous by definition and not what anyone > believes it is according to their own personal experience. If > someone has primarily a mold sensitivity and gets well by avoidance > then it would seem that they may not have what everyone else had in > Incline Village, as has stated that none of the original > epidemic population has recovered. How does this equate with playing > this Incline Village prototype for CFS and being in this constant > frenzy about defending the name CFS and trying to prove one's own > version. > It seems disingenuous and rather odd under the circumstances. > Jill > > > > Jill. > You have carried on this " frenzy " of attacking me for " defending > CFS " for several years now. > The events regarding the origin of CFS have been well documented and > are easily verifiable. Your assertions of " disingenuous " are > themselves demonstrable to be disingenuous. > The illness happened exactly as we described and was named CFS. > No matter what damage has been done by any of the names involved, > or how much you dislike what has already happened - you cannot > change events long past or discount them, claiming that they should > not have happened. > It doesn't seem to bother you that your constant statements > that " CFS is fatigue " are in total support and agreement with > deniers and denigrators of the illness, and do not serve the purpose > of people who are attempting to have " CFS " recognized to the extent > necessary that this serious and disabling illness can get the > credibility it needs to garner research and a serious medical name. > You are fond of telling me that I am spreading " disengenuous lies " > for " defending CFS " , yet strangely you fail to mention that this > also means that Dr Cheney, , and the authors of the Canadian > Guidelines must also be spreading disingenuous lies - if they they > share my views that CFS happened as we all said. Is CFS meaningful > to you when they say it - but " disingenuous " when I do? > In your desire to undo the damage you blame strictly on the > name " CFS " instead of those who have always fought the illness, no > matter WHAT name it went under, you have become a worse attacker of > CFS than Wessely or even the most stalwart disbelievers. > Your efforts to " advocate " for CFS by attempting to spread the view > that CFS is nothing more than a hodgepodge of meaningless > complaints, that CFSers are to blame for the name because they > didn't beg the CDC hard enough for change it, and that doctors are > correct to ignore immunological abnormalities in their patients and > are perfectly right to believe only believe what they read in media > and medical journals is a tactic that should earn your own reward > and obtain for you just exactly what you deserve - should things > turn out the way you ask. Simply apply that same trust in doctors > and the CDC's handling of ME and see what you get! > > You don't even have a clear idea of what you are begging the CDC > for. More funding for CFS? More research? A better name? > No, that can't be it. > Since you espouse the view that " CFS is fatigue " , it is consequent > that you would ask the CDC that CFS be de-funded and that no > recognition be accorded and no research be performed. > Since you have the view that " CFS is not ME " , you cannot ask the > CDC to change the name of CFS to ME. > What name is it that you wish to " change " , if CFS does not represent > any illness? > Have you told everyone who signed that name change petition that > they cannot ask for a name change because in your view. " CFS is not > ME. It has been proven " . > Bottom line is that all you are doing in these groups is saying that > CFS doesn't exist. > Your ridiculous view has no possibility to prevail against the > evidence of immune abnormalities in CFS, yet you seem unable to > reconcile or even recognize the untenable conflictory nature of your > beliefs and assertions. > > > But in the meantime, I invite you be " productive " and beg, > supplicate, petition and beseech the CDC for that mysterious name > change you refer to, - from what? to what?. And be sure to mention > that " CFS is fatigue " and doesn't represent anything that needs a > better name, while you are at it. > The harder you try to maintain self-contradictory positions - the > more of a statement about your mental processes it makes. > > While you're busy doing that, I will continue on with the " false > and disingenuous lies " notion that CFS is what the original > describers: Dr Cheney and Dr said it is, and that > distortions that came later are precisely that: > Distortions! > You cannot change that either, except in the depths of your own > twisted and convoluted mind. > The original intent of the CFS study group was to outline a loose > definition to help doctors identify the concurrent complaints which > constitute a phenemonen which needed further research to delineate. > Instead of using CFS as the tool it was meant to be, YOU denialist > chose to use it against sufferers by claiming that whatever was in > that definition was the sum total of the illness - for your own > twisted, and frankly, psychotic and anti-patient reasons. > You and Wessely have your own " fatigue " and " heterogeneous " > versions which you have picked over and made up to suit yourselves, > long after the fact, but only those who were in the original study > group which was used to define CFS can say that whatever the > illness turns out to be, were present at the true basis and origin > of CFS, no matter how much you happen to dislike the facts. > All you did was hear " CFS " somewhere and create your own conviction > that you know what it is, based on your own deliberately distorted > misinterpretation of nonPWC expressed definitions and later > descriptions that have been filtered through layers of > misunderstanding created by denialists and obfusticators, such as > yourself. > Whatever the motivation was behind creation of the name " CFS " , we > are the ones the term was invented for - and if anyone associates > CFS with " Yuppie Flu " or Incine Village, then they are comparing > against the phenomenon of which I have personal knowledge and > experience. > It is the original CFS that I describe. > And NOT whatever YOU choose to think CFS is. > You cannot alter that, unless you figure out a way to go back in > time and change history. > > > As for the mycotoxin mediation of symptoms, you will notice that I > don't try to force it down anyones throats. > It has been made clear to me that nobody is interested, so I leave > it up to them whether they wish to pursue the clues I've put out. > When I had no other options and nothing else had helped in any > significant way - I found something that made a difference. > When Dr Cheney asked to volunteer to be a participant the CDC > study group to define CFS - he demanded that I must be in the group > because " You are the purest case of illness and a member of the > original cohort " . > Dr re-affirmed this 1997 during the ampligen protocols and > again when I was in the NIH 1999 " Original CFS cohort study " . > You cannot accuse me of being a mistake without implicitly > contradicting Dr Cheney and Dr s judgment and decision to > include me as a prototypical case of the phenomenon. > I walked out of the ampligen screening protocol and recovered to > the extent I did by doing exactly what I say I did by doing > something that other people have not tried. If you don't like a CFS > original performing a demonstration of some level of recovery by a > proposed concerted strategy while in an NIH study program... > If you are desperately attempting to avoid find something that might > make a difference... > Tough! - For you! > Your actions are rather odd, under the circumstances. > Perhaps study of your brain might yield some answers as to why a > large percentage of the population responds to novel concepts and > unfamiliar phenomenon with automatic disbelief, disdain and denial. > Even if it is not to their benefit to do so. > > My agenda was to gain the attention of some serious researcher into > the mycotoxin connection to CFS and I have succeeded - despite the > total unwillingness of CFSers to support me in this venture. > The evidence I have to date is that CFSers decision to belittle my > story and undermine my efforts to draw attention to this abnormality > to the CFS illness model is one that many will regret someday. > Biotoxin mediation is reality. > In the future, your reaction to my experience may well serve as a > cautionary example of how the purest arrogance is to be found in > those who pre-emptively dismiss information which was later found to > be factual, simply because they consider that anyone who challenges > the status quo is presumptuous and " arrogant " for daring to act > beyond the boundaries of their status - regardless of the inherent > truth or falsity of the information involved. > > As a Holmes et al participant, it was MY blood, symptoms, immune > abnormalities and illness that directly received the term " CFS " . > > Who has more right or better credentials to say they know a thing or > two about CFS in it's original form at the time of its naming than > someone who was there? > If I say that I found something that helped me, and was a factor in > what happened in Incline Village, your eagerness to disregard and > suppress it before you even find out if I'm mistaken or lying makes > your obstinate, intransigent and closed mindset exemplary of those > who fight to destroy sufferers of CFS without examining the facts. > If one looks beyond the words used by denialists to find the > underlying reasons why words just don't work with some people, they > will find a certain type of mentality. > Your mentality. > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 thinks he is a classic case of CFS. There is good reason to disagree. I am not blocking any information (other than his meaningless, emotional tirades). Because he can control his illness, then everyone can control their illness by avoiding toxic mold? I doubt it. He may be a classic case of mold sensitivity. If he can climb mountains and skydive why waste so much time defending the indefensible. Or why is he so angry - would consider him to be one of the (very few) lucky ones who have recovered. Jill ____________________________ CFS hypothesis development news  Message #101453 Re: CFS hypothesis development news Um. Adrienne, is not very sick. That is part of his whole point. You have missed his entire point. So has Jill. He is a classic case of cfs. He controls his disease by avoiding toxic mold. If you chose to block that piece of valuable information, as does Jill, this is your loss, not 's. He is the one out skydving and climbing Mt Ranier, after all. a Carnes ___________________ Anybody who can write that long a diatribe cannot be real sick. Guess its just time to put you back on blocked, where you were until I had to reformat my harddrive. How rude selfish and disrespectful you are to the rest of us, dumping your load here where it doesn't belong. Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Jill, I don't care what your explanation is. All I know is that whenever, wherever you and are on the same list, the fighting is interminable and exhausting for everybody else. I am not interested in ANYTHING you have to say. You two are pathological together, and nobody on this list has the time or energy to listen to it. Especially those of us who've already sat through this 62,000 times before. We have not yet heard from the list manager. Ken, you need to deal with this NOW. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Jill McLaughlin wrote: > thinks he is a classic case of CFS. There is good reason to disagree. I am not blocking any information (other than his meaningless, emotional tirades). Because he can control his illness, then everyone can control their illness by avoiding toxic mold? I doubt it. He may be a classic case of mold sensitivity. If he can climb mountains and skydive why waste so much time defending the indefensible. Or why is he so angry - would consider him to be one of the (very few) lucky ones who have recovered. > Jill Then you had best inform Dr Cheney and Dr that they were wrong to call me " The purest case of CFS " both at the inception of CFS and then again eleven years later in an NIH sponsored study. There was nothing known as CFS until a few individuals selected from the " Yuppie Flu " phenomenon were used to refine the parameters of a syndromic description - and the term " CFS " was applied to us. If you use the term " CFS " you cannot escape the fact that you are comparing your illness to the people in that group. And that means - in part, to me. But even if I was the sole " moldie " that was mistakenly included, (except that I'm not) still, this abnormality calls for research - as it would demonstrate that trichothecene mycotoxicosis and CFS may be indistinguishable from each other - as Rick M.S. of Lawrence Livermore wrote in a 1994 abstract. Rich Vankonynenberg knows Rick and has heard this story many years ago, and can verify this if you ask him. That means there is no telling how many of you might be mold responders since you are not looking to find out. We have measurements of innate immune activation responses that confirm the fact that, for whatever reason, PWC's are profoundly affected by biotoxins. Some of these toxins may be avoided, if they are understood for the neurotoxic threat they are. I performed an experiment while under scrutiny of a NIH study to test what might be possible by a strategy of concerted mold avoidance. I was a prototype for the very basis of CFS and you reject my experiment out of hand, as CFSers have consistently done for eight years now since I made this demonstration. CFS researchers and CFS victims inexplicably and counterproductively took the lead in trying to suppress the results of that demonstration and deprive themselves of making any possible use of the concept. This group is supposedly dedicated to experimental treatments for CFS, yet the conduct of this group has been diametrically opposed to the purported reason for its very existence. I wouldn't have believed you CFSers would choose to do this to yourselves if I hadn't witnessed it. You people are going to force me to apologize to Prof. Wessely and Dr. Reeves. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 On Jul 12, 2006, at 9:06 AM, Doyon wrote: > Hi , > > Thanks for your interesting post. As one of the original people to > get the illness that > plagued people in Incline Village I am curious if you can tell me > how symptoms there were > different than the symptoms outlined in 1994 by the CDC which seem > to describe what > has been termed " yuppie flu " and outline a set of symptoms that a > lot of people in Silicon > Valley were originally getting at the time? This could be interesting, since I was living in Santa Clara in the winter of 84-85, which is when the disease first really hit. I'd had a bout of non-EBV " mono " while in the UCLA dorms in 1977, and hadn't ever been quite the same afterward -- although I lived a very normal and active life, going on to be a varsity athlete at USC, even. But '84 was a calamitous year on most fronts for me (got divorced, moved three times, had several 100-hour/week jobs in succession, got in two rear-ender car crashes in one week, got a kidney infection....and that's just the first nine months); by November, I went to bed and pretty much stayed there for the next two years. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hi Bill, It doesn't put me on the spot and not sure what is confusing as I have said many times that I am not a patient but have children who are sick. I have no problem with mold or toxins or that they could be a problem or that it would be a good idea to avoid it if it causes problems for you but not as the cause. As I said, has said that no one from the initial outbreak has gotten well yet he apparently has, so why was the exception chosen as the rule? Or if and Cheney knew he was the best and purest and be-all-end-all CFS case, then why didn't they follow up with and adopt the mold hypothesis. If the CDC and NIH " chose " him and his blood and abnormalities and realized that this is what it was all about, then why have they not followed up on it? It makes no sense. So I personally do not believe that is THE " CFS " prototype even if he was initially chosen by the CDC as he claims and have a right to express my opinion. I have a problem with those who go off on these irrational rants when corrected or challenged and repeatedly defend the name and attack those who disagree. So I would maintain that the real " CFS deniers " are those who fail to recognize the damage that the demeaning, trivializing name (of one symptom, not an illness) and overly broad definition based on only one nondescript symptom have caused, which has been proven. I find to be very rude and disrespectful in general and have no intention of dialoguing with him. Suppose my educated guess as to the " cause " would be on HHV-6. That is what was found originally in Incline Village. Jill ________________________ Message #101484 Re: Jill McLaughlin jill i'm sorry if this seems to put you on the spot. i don't mean to do that.you obviously have no obligation to answer. i just can't quite figure out your perspective on CFS and thought it would help me understand where you are coming from. i guess i don't know why you have such a problem with 's ideas on CFS. there has been a lot of evidence coming out that toxins and oxidative stress play major roles in CFS, so i don't understand why suggesting that mold toxins could be a significant problem with PWCs and eliminating mold exposure could help you feel better is such a stretch from the current ideas on our disease. maybe it won't make everyone feel better, but it ceratinly seems like a logical thing to do anyway. also, there is Dr Shoemaker who has had significant success in treating PWCs by trying to counteract and eliminate mold exposure in his patients. personally, i don't think that mold exposure caused my CFS, but it still would make sense to avoid it and treat it if you can. why do 's ideas bother you so much? thanks bill > > jill > > i have to admit that i often find your posts very confusing. i was > wondering if you could clear something up for me. > > do you have CFS? > > if yes, what do you believe is the cause of your CFS, and what > treatments are you currently using? > > if no, what is your connection to CFS? > > thanks > bill > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 THe interaction between NK cell functioning and stress certainly is interesting. The Fletcher/klimas team that recently found reduced perforin levels in NK cells in CFS patients believes they were due, however, to chronic NK cell activation due to pathogenic activity. They believe this because there is evidence of this in another disease - I'm not sure which. I dont think perforin levels have been assessed in reference to stress yet - that would be interesting. winsomme <winsomme@...> wrote: cort this is a fascinating question, and there is tons of info out there on it. it seems like there really is info on both sides of the idea of stress and how it relates to cancer. here is one link that i found in just the quickest of searches: http://news-service.stanford.edu/news/2003/october8/psychiatric.html but another interesting facet that connects this to CFS is how they discuss NK cell activity (which among other things are cancer fighting cells) and how it is affected by stress. personally, i think stress is not the primary cause of CFS, but certainly is a factor. thanks bill -- In , cort johnson <cortttt@...> wrote: > > I read surprisingly enough that several studies > examining stress in cancer have found that it does not > appear to be a risk factor for coming down with > cancer; that is increased levels of stress for a > particular period of time do not appear to predispose > one to cancer. > > Cort > > --- winsomme <winsomme@...> wrote: > > > Hi Rich et al, > > > > i think an important question to ask, and nearly > > impossible to answer > > at this point is not if stress is a co-factor in > > CFS, but is it more > > a factor than it is in many other diseases like > > cancer and heart > > disease, MS and even AIDS. > > > > it's hard to think of a major medical condition > > where stress isn't a > > significant factor. > > > > thanks > > bill > > > > > > > > > > > > > > > > > Why do you always have to throw in a little jab > > about stress > > > playing > > > > a part even though it is only an associative > > variable that many > > of > > > us > > > > didnt' have? > > > > Don't you know what we've been through with > > this? > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 > Let's not forget that " RNase dysfunction impairs Mercury clearance " > which was presented at a past AACFS conference, (It's on Cort's > website). How many people know this? very few. Which is good, since it isn't correct. Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 I studied what does and doesn't affect mercury clearance (most of which is readily available in a very large number of easy to find papers, a little of which isn't). " I don't think anyone can know " sounds to me like the sanctimonious chant of all the doctors who tell poor CFSers " nothing can be done. " How can you know what I can and can't figure out? All you can really know is what YOU can and can't figure out. I very seldom insist on titles, but for you it is " Dr. " Cutler - PhD chemist. And yes, I can figure this one out just fine. BTW, the " multidrug transporter " isn't what moves mercury around. Andy PS I am sure of what I say because I limit my statements of fact to areas in which I do have specialized knowledge. I realize this is unusual on the internet. > And how in the world would you know that? I dont think anyone can know because it really hasnt been studied has it? As I remember there is evidence that the multi-drug transporter may be effected by Rnase L dysfunction but I dont remember the paper actually stating mercury. But somehow Mr Cutler, who is so confident in so much of what he says, can say categorically that it does not. It would be nice to have some evidence for that statement. > > andrewhallcutler <AndyCutler@...> wrote: > Let's not forget that " RNase dysfunction impairs Mercury clearance " > > which was presented at a past AACFS conference, (It's on Cort's > > website). How many people know this? very few. > > Which is good, since it isn't correct. > > Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Cort wrote: And how in the world would you know that? I dont think anyone can know because it really hasnt been studied has it? As I remember there is evidence that the multi-drug transporter may be effected by Rnase L dysfunction but I dont remember the paper actually stating mercury. But somehow Mr Cutler, who is so confident in so much of what he says, can say categorically that it does not. It would be nice to have some evidence for that statement. Cort and Andy: Stop insulting each other and go back and read DeMeirleir's book. Does he have to mention mercury to cause one to figure RNaseL dysfunction would lead to overload and inability to clear toxins in certain people? I have attached here my brief summary of just one section of D's book. I think there are clues here that would lead one to conclude some will not be able to clear mercury. I recall hearing DeMeirleir speak in Reno with a chart showing all the fallout from RNaseL dysfunction. Certainly liver dysfunction is a part of this, and what clears mercury? How about a good healthy, genetically sound liver? Please do not copy this excerpt from my article. a Carnes Ribonuclease L or RNase L is regulated by its natural inhibitor protein or polypeptide, RNase L inhibitor (RLI). Vojdani et al found that RLI is down regulated in CFS patients. This would lead to overactive or dysfunctional RNase L activity. Englebienne writes, " .all the ABC transporters identified as analogous to RLI play physiological roles of which a dysfunction can be related to various CFS symptoms. The occurrence of channel-opathies in CFS had already been suspected on grounds of clinical observation with cardiac muscle thallium uptake. " P. 90 Some of the symptoms which are linked to this RLI dysfunction are chemical sensitivities, pain, night sweats, muscular and cardiac symptoms, irritable bowel, abnormal glucose metabolism, and cholesterol and phospholipids transport. Viruses such as HTLV II, mycoplasmas, and HIV type 1 have been demonstrated to alter ion channel functions such as RLI and others. There is need for further study in this area. Another result of the dysfunctional cellular communication in CFS is the resistance of cells to the hormones which regulate them. " .one can reasonably consider that the dysregulation of the IFN (interferon) regulating pathway in these patients can be responsible for a peripheral resistance to thyroid hormones, explaining the extreme fatigue with a normal or subnormal thyroid hormone profile. " P. 116 Growth hormone replacement seems to aid a subset of patients as well. Apoptosis, or cell death, is related to the extent of RNase L cleavage. The higher the RNase L damage the higher the rate of apoptosis. It is not clear whether this apoptosis is cause or effect. It is certainly possible that this cell death is being caused by opportunistic infections which are intracellular or live inside the cells. These infections would include viruses, chlamydia, and mycoplasmas. In those patients who have this dysregulated RNase L pathway what would their disease look like? It would be a complex disease with secondary diseases superimposed upon it. The researchers grouped symptoms in four categories, general, neurocognitive, musculoskeletal, and psychiatric. Mood change, the psychiatric factor did not vary between CFS patients and controls. Those patients with the higher level of the 37kDa RNase-L were sicker. There was also indication of viral reactivation in these patients. " .this would suggest that the general CFS symptoms are the normal reactions associated with a reactivated virus or infection and most likely represent an increase in total RNase-L activity and the fragmentation of the RNase-L enzyme system proteins. " P. 181 Amino acid abnormalities seem to cause muscle pain and fatigue. Some of these were similar to patients with rheumatoid arthritis. There was an upregulation of nitric oxide. " Analysis of the data from over 1500 patients shows that the more severe the pain and fatigue symptoms in a patient, the higher the level of serum lipids and lower the excretion of amino acids. " P 186-7 Much like HIV patients, CFS patients develop secondary conditions. These fall into two categories: 1. infections that activate cytokines and 2. factors that reduce energy supply. The infections may be reactivated viruses such as herpes, adenoviruses, and CMV. The infections may be L form bacteria such as the mycoplasmas, with m. fermentans being the one most commonly found in up to 60% of patients. De Meirleir found that antibodies to mycoplasma was unrelated to RNase L defects but a positive PCR for mycoplasma was related to RNase L defect level. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 You're right - I cannot know what you have figured out. The problem is that I simply could not imagine how you could figure out if RNase L fragmentation does or does not predispose a person to have problems with mercury. If you have a short outline that could explain that thinking then I'd love to hear it. Obviously I cant know what you're thinking - but that does not in any suggest what you're thinking is correct. Dismissing my question simply because I dont know you're thinking certainly sheds little light on the issue. I wasn't talking about treament protocols or the advisability of trying one other other was I? So why throw me in that boat? I think we're all clear that physicians and researchers such as yourself are almost always ahead of the treatment curve relative to research field and nothing about my statement suggested that a CFS patients should try every treatment protocol that worked for him or her. The segue from my statement to that response mostly eludes me. Dr De Meirleir and other have proposed that RNase L fragmentation can lead to. or at least be associated with Stat I inhibition in CFS. Stat 1 is a signaling protein important in inducing the inteferon pathway through which RNase L, PKR and the Mx enzymes are activated. This suggests that RNase L fragmentation could knock out Stat I and thus inhibit activation of the IFN pathway. The article I was referring to given below suggests that Protein Kinase R - when activated - helps protect our cells against mercury. This of course suggests that reduced PKR activity due to Stat I inhibition perhaps because of RNase L fragmentation in CFS patients could leave cells at risk of mercury accumulations .This is rather convolutedI know. http://phoenix-cfs.org/HHV-6.htm Achard-Joris M, Bourdineaud JP. Related Articles, Links Heterologous expression of bacterial and human multidrug resistance proteins protect Escherichia coli against mercury and zinc contamination. Biometals. 2006 May 16; [Epub ahead of print] PMID: 16703280 [PubMed - as supplied by publisher] [input] 2: Szczepanowski R, Braun S, Riedel V, Schneiker S, Krahn I, Puhler A, Schluter A. Related Articles, Links The 120 592 bp IncF plasmid pRSB107 isolated from a sewage-treatment plant encodes nine different antibiotic-resistance determinants, two iron-acquisition systems and other putative virulence-associated functions. Microbiology. 2005 Apr;151(Pt 4):1095-111. PMID: 15817778 [PubMed - indexed for MEDLINE] [input] 3: Aleo MF, Morandini F, Bettoni F, Giuliani R, Rovetta F, Steimberg N, Apostoli P, Parrinello G, Mazzoleni G. Related Articles, Links Endogenous thiols and MRP transporters contribute to Hg2+ efflux in HgCl2-treated tubular MDCK cells. Toxicology. 2005 Jan 5;206(1):137-51. PMID: 15590114 [PubMed - indexed for MEDLINE] [input] 4: Kim SH, Bark H, Choi CH. Related Articles, Links Mercury induces multidrug resistance-associated protein gene through p38 mitogen-activated protein kinase. Toxicol Lett. 2005 Jan 15;155(1):143-50. PMID: 15585369 [PubMed - indexed for MEDLINE] Ballatori N. Related Articles, Links Transport of toxic metals by molecular mimicry. Environ Health Perspect. 2002 Oct;110 Suppl 5:689-94. Review. PMID: 12426113 [PubMed - indexed for MEDLINE] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 boy, guess the heat's getting everybody. Come on guys. Lighten up! It is like an ambush to open a post sometimes. Re: CFS hypothesis development news I studied what does and doesn't affect mercury clearance (most of which is readily available in a very large number of easy to find papers, a little of which isn't). " I don't think anyone can know " sounds to me like the sanctimonious chant of all the doctors who tell poor CFSers " nothing can be done. " How can you know what I can and can't figure out? All you can really know is what YOU can and can't figure out. I very seldom insist on titles, but for you it is " Dr. " Cutler - PhD chemist. And yes, I can figure this one out just fine. BTW, the " multidrug transporter " isn't what moves mercury around. Andy PS I am sure of what I say because I limit my statements of fact to areas in which I do have specialized knowledge. I realize this is unusual on the internet. > And how in the world would you know that? I dont think anyone can know because it really hasnt been studied has it? As I remember there is evidence that the multi-drug transporter may be effected by Rnase L dysfunction but I dont remember the paper actually stating mercury. But somehow Mr Cutler, who is so confident in so much of what he says, can say categorically that it does not. It would be nice to have some evidence for that statement. > > andrewhallcutler <AndyCutler@...> wrote: > Let's not forget that " RNase dysfunction impairs Mercury clearance " > > which was presented at a past AACFS conference, (It's on Cort's > > website). How many people know this? very few. > > Which is good, since it isn't correct. > > Andy This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 How is this reversed? a Carnes <pj7@...> wrote: Thanks, Cort, for this nice summary. I think it is about as clear as one can get without a PhD in this stuff. Basically what I saw DeMeirleir explain about 5 years ago is that the fallout from the RNase L fragmentation affects just about every body system including endocrine and liver. a Cort wrote: Dr De Meirleir and other have proposed that RNase L fragmentation can lead to. or at least be associated with Stat I inhibition in CFS. Stat 1 is a signaling protein important in inducing the inteferon pathway through which RNase L, PKR and the Mx enzymes are activated. This suggests that RNase L fragmentation could knock out Stat I and thus inhibit activation of the IFN pathway. The article I was referring to given below suggests that Protein Kinase R - when activated - helps protect our cells against mercury. This of course suggests that reduced PKR activity due to Stat I inhibition perhaps because of RNase L fragmentation in CFS patients could leave cells at risk of mercury accumulations .This is rather convolutedI know. <http://phoenix-cfs.org/HHV-6.htm> http://phoenix-cfs.org/HHV-6.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Edy, DeMeirleir spoke at the AACFS conf. He and his staff there were the most positive of any of the doctors claiming MANY, not all, of their patients are recovering. He does not talk CBT etc like so many of the European doctors. He used to work with Ampligen but found it really didn't repair the damage, perhaps kept it at bay. He still uses antibiotics because mycoplasmas and possibly several other bacteria do degrade NRaseL. This is not commonly known. So many think that only viruses do this, so you have to take antivirals. Not so. In fact MY hunch is most of our cfs problems stem from certain bacteria such as mycoplasma which degrade RNaseL just like a virus does. If you immune system can't clear the bacteria or the virus you cycle into RNaseL hell. So what to do? If possible find out what you are infected with. Then treat the infection with longterm antibiotics. At the same time add in all the stuff Rich V mentions to raise glutathione levels. See a good endocrinologist to address any endocrine problems such as thyroid and growth hormone. Keep taking whey protein, ImmunoPro RX is a good brand. This raises glutathione. The RNase L problem is certainly reversible IF you can kill the infection and immune system dysfunction. a Carnes Quote Link to comment Share on other sites More sharing options...
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