Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Hi , the only mds i care about are the ones involved in cfids reserach as we have all had the same horrible experiances by the majority of the healthcare profession all over the world. Let the cfids researchers try to get patients by their top five symtoms or subsets etc..to providing meaniful treatment or take holistic approach for interconnecteness treatments. my two cents. somish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Since Dr Cheney took gallons of my blood to help prove that EBV was not the cause of CFS at a time when the illness was called " Chronic EBV " , I figured I have a " debt to posterior " (Bad Pun, I know, you don't have to tell me) to get tested for Lyme. Trouble is, I can't find a doctor who isn't virtually brain dead. When you approach a doctor with information that has already been verified but they are still in the " That's IMPOSSIBLE " stage, it undermines your confidence in anything they do or think. (It is amazing how doctors are capable of slinking through the " That's Impossible " mentality into " That's self evident " stage with scarcely a single apology to any of their former victims - Did a single person with ulcers ever get a refund, apology, or even a letter from their gastroenterologist who just recently found out about H Pylori? ) I called a doctors office who was said to be LL and highly motivated to learn about CFS. I was told that the doctor is looking to make a name in this field. He is said to be a friend of Dr . When I asked what his concepts for causality were, I was told that CFS is a combination of emotional stress and thyroid dysfunction. I never heard Dr or Dr Cheney even remotely suggest that " stress " and " thyroid " swept through Incline Village as an epidemic. Dr is quite clear about implicating HHV6a as an encephalitic viral infection. I simply cannot believe that anyone at this stage of the game can still confuse the " emotional " manifestations of this illness as cause rather than effect. Especially since so many people have made it abundantly clear in plain spoken English that even a doctor should be able to understand. " We are depressed because we are sick, not sick because we are depressed. " How long were ulcers attributed to diet and stress? It's undeniable that they go together but it's incredible that it took so long to find out that they had the relationship completely backwards and that it is somewhat reasonable to have a heightened sense of anxiety and stress and perhaps some digestive irregularities when bacteria are burrowing holes in your guts. I called up Dr s office to express my incredulity that anyone that he has associated with could labor under such misapprehensions that have been demolished so long ago and that I reject stress as a co factor. I am waiting for an explanation from the LLMDs office and I hope that this was a misunderstanding and not an accurate representation of the doctors CFS concepts. Because if it is, I am going to rip him a new posterior orifice. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 , At the risk of having you attempt to modify my " posterior orifice " as you put it, let me pass on some of the results of a CFS triggering factors study that was published by P. De Becker, N. McGregor and K. De Meirleir (Journal of CFS 10(2)2002, pp. 3-18). In this work, they studied 1,546 PWCs and 309 patients who were fatigued but did not meet the criteria for CFS. They interviewed them to get their histories, and they also made use of their lab tests, to determine what factors contributed to the onset of their illness. They came up with a total of 26 different triggering factors, the ones occurring most often being upper respiratory tract infection, " unknown gradual onset, " flu-like illness, viral infection, and other infection (bacterial). After these factors, the one mentioned next most frequently was " stress. " This one was reported to have been significant in nearly 10% of the PWCs who met the Fukuda et al. criteria for CFS. Stress was found to be 4.5 times as likely a significant triggering factor in the PWCs as in those with non-CFS fatigue. The point I want to make here is one I have tried to make before. That is that emotional stress is not a factor in the onset of every case of CFS. I know that you aren't fond of the term subsets, so call them groupings, if you want, but the point is that every person's experience isn't the same. If these results are accurate, we might say that stress wasn't a significant factor in 90% of the cases they studied, at least by the self-reports of the PWCs and the appraisal of the doctors. However, it was a factor in some cases, and I would say that of the cases I have studied in detail myself, it was a factor in more than 10%. I'm perfectly prepared to believe that emotional stress was not a factor in the onset of your illness if you say it wasn't. However, I don't think it's valid to generalize your own personal experience to all PWCs, because there is quite a range in experience. And by the way, suffering from emotional stress is not a character flaw. We all have different emotional makeups. Rich > Since Dr Cheney took gallons of my blood to help prove that EBV was > not the cause of CFS at a time when the illness was called " Chronic > EBV " , I figured I have a " debt to posterior " (Bad Pun, I know, you > don't have to tell me) to get tested for Lyme. > Trouble is, I can't find a doctor who isn't virtually brain dead. > When you approach a doctor with information that has already been > verified but they are still in the " That's IMPOSSIBLE " stage, it > undermines your confidence in anything they do or think. > (It is amazing how doctors are capable of slinking through the " That's > Impossible " mentality into " That's self evident " stage with scarcely a > single apology to any of their former victims - Did a single person > with ulcers ever get a refund, apology, or even a letter from their > gastroenterologist who just recently found out about H Pylori? ) > I called a doctors office who was said to be LL and highly motivated > to learn about CFS. I was told that the doctor is looking to make a > name in this field. He is said to be a friend of Dr . > When I asked what his concepts for causality were, I was told that CFS > is a combination of emotional stress and thyroid dysfunction. > I never heard Dr or Dr Cheney even remotely suggest that > " stress " and " thyroid " swept through Incline Village as an epidemic. > Dr is quite clear about implicating HHV6a as an encephalitic > viral infection. I simply cannot believe that anyone at this stage of > the game can still confuse the " emotional " manifestations of this > illness as cause rather than effect. Especially since so many people > have made it abundantly clear in plain spoken English that even a > doctor should be able to understand. > " We are depressed because we are sick, not sick because we are > depressed. " > How long were ulcers attributed to diet and stress? > It's undeniable that they go together but it's incredible that it took > so long to find out that they had the relationship completely > backwards and that it is somewhat reasonable to have a heightened > sense of anxiety and stress and perhaps some digestive irregularities > when bacteria are burrowing holes in your guts. > I called up Dr s office to express my incredulity that anyone > that he has associated with could labor under such misapprehensions > that have been demolished so long ago and that I reject stress as a co > factor. I am waiting for an explanation from the LLMDs office and I > hope that this was a misunderstanding and not an accurate > representation of the doctors CFS concepts. > Because if it is, I am going to rip him a new posterior orifice. > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 It would be interesting to see if Stress is simply a coincidental factor. I mean if they picked 2000 people from the general population who did not suffer from CFS and asked them if they had suffered from emotional stress within the last 6 months, Im sure that atleast 10% would report that they have. Our modern society is highly conducive to a stressful lifestyle. That being said, I agree with you Rich that stress plays a part in the onset of CFS in some people. As you've pointed out increased adrenaline production depletes glutathione, which inturn allows for increased microbial replication and stress on its own is proven to deplete the immune system. But I wonder if stress in isolation is a sufficient factor to trigger CFS in an individual. I think maybe stress combined with some kind of infection such as mycoplasma could result in CFS. I know in my case I suffered a lot of stress prior to the onset of my illness, but I also have mycoplasma. Sincerely, . > , > > At the risk of having you attempt to modify my " posterior orifice " > as you put it, let me pass on some of the results of a CFS > triggering factors study that was published by P. De Becker, N. > McGregor and K. De Meirleir (Journal of CFS 10(2)2002, pp. 3-18). > > In this work, they studied 1,546 PWCs and 309 patients who were > fatigued but did not meet the criteria for CFS. They interviewed > them to get their histories, and they also made use of their lab > tests, to determine what factors contributed to the onset of their > illness. > > They came up with a total of 26 different triggering factors, the > ones occurring most often being upper respiratory tract > infection, " unknown gradual onset, " flu-like illness, viral > infection, and other infection (bacterial). After these factors, > the one mentioned next most frequently was " stress. " This one was > reported to have been significant in nearly 10% of the PWCs who met > the Fukuda et al. criteria for CFS. Stress was found to be 4.5 > times as likely a significant triggering factor in the PWCs as in > those with non-CFS fatigue. > > The point I want to make here is one I have tried to make before. > That is that emotional stress is not a factor in the onset of every > case of CFS. I know that you aren't fond of the term subsets, so > call them groupings, if you want, but the point is that every > person's experience isn't the same. If these results are accurate, > we might say that stress wasn't a significant factor in 90% of the > cases they studied, at least by the self-reports of the PWCs and the > appraisal of the doctors. However, it was a factor in some cases, > and I would say that of the cases I have studied in detail myself, > it was a factor in more than 10%. > > I'm perfectly prepared to believe that emotional stress was not a > factor in the onset of your illness if you say it wasn't. However, > I don't think it's valid to generalize your own personal experience > to all PWCs, because there is quite a range in experience. > > And by the way, suffering from emotional stress is not a character > flaw. We all have different emotional makeups. > > Rich > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Hi, Is about Toxoplasmosis? Light <jligh000@...> wrote:It would be interesting to see if Stress is simply a coincidental factor. I mean if they picked 2000 people from the general population who did not suffer from CFS and asked them if they had suffered from emotional stress within the last 6 months, Im sure that atleast 10% would report that they have. Our modern society is highly conducive to a stressful lifestyle. That being said, I agree with you Rich that stress plays a part in the onset of CFS in some people. As you've pointed out increased adrenaline production depletes glutathione, which inturn allows for increased microbial replication and stress on its own is proven to deplete the immune system. But I wonder if stress in isolation is a sufficient factor to trigger CFS in an individual. I think maybe stress combined with some kind of infection such as mycoplasma could result in CFS. I know in my case I suffered a lot of stress prior to the onset of my illness, but I also have mycoplasma. Sincerely, . > , > > At the risk of having you attempt to modify my " posterior orifice " > as you put it, let me pass on some of the results of a CFS > triggering factors study that was published by P. De Becker, N. > McGregor and K. De Meirleir (Journal of CFS 10(2)2002, pp. 3-18). > > In this work, they studied 1,546 PWCs and 309 patients who were > fatigued but did not meet the criteria for CFS. They interviewed > them to get their histories, and they also made use of their lab > tests, to determine what factors contributed to the onset of their > illness. > > They came up with a total of 26 different triggering factors, the > ones occurring most often being upper respiratory tract > infection, " unknown gradual onset, " flu-like illness, viral > infection, and other infection (bacterial). After these factors, > the one mentioned next most frequently was " stress. " This one was > reported to have been significant in nearly 10% of the PWCs who met > the Fukuda et al. criteria for CFS. Stress was found to be 4.5 > times as likely a significant triggering factor in the PWCs as in > those with non-CFS fatigue. > > The point I want to make here is one I have tried to make before. > That is that emotional stress is not a factor in the onset of every > case of CFS. I know that you aren't fond of the term subsets, so > call them groupings, if you want, but the point is that every > person's experience isn't the same. If these results are accurate, > we might say that stress wasn't a significant factor in 90% of the > cases they studied, at least by the self-reports of the PWCs and the > appraisal of the doctors. However, it was a factor in some cases, > and I would say that of the cases I have studied in detail myself, > it was a factor in more than 10%. > > I'm perfectly prepared to believe that emotional stress was not a > factor in the onset of your illness if you say it wasn't. However, > I don't think it's valid to generalize your own personal experience > to all PWCs, because there is quite a range in experience. > > And by the way, suffering from emotional stress is not a character > flaw. We all have different emotional makeups. > > Rich > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 I agree that stress is a factor, but not in the way people think of it as an immune depressing causative factor. At the moment you were feeling the onset of CFS if you had only thunk happy thoughts, could it all have been avoided? I know all too well the overpowering nature of depression and there is no way in hell you can " happythink " your way out of it. Then I discovered that while sadness and grief are reasonable emotions to feel in the face of having your life stolen from you, my overpowering suicidal depressive thoughts seemed to " come out of nowhere " . But that " nowhere " had a pattern. My depression never corresponded to any emotional stimulus but had a perfect correlation to the inflammatory response to chemical irritants. The incredible correlation of my depression to toxic exposure made me wonder if perhaps the entire basis of depression is misunderstood. If nature wanted to induce an animal to change its location or eating habits to avoid toxic exposures, what " emotions " would serve better than anxiety and depression? I decided to treat my anx/dep response as an indicator of toxic exposure and do whatever it takes to avoid areas and objects that induced a " mood change " . As I described to you, the results were spectacular. Far from being a useless by-product of emotional instability, the Anx/Dep response turned out to be my most useful tool for avoiding toxic exposure and relief of CFS symptoms. So I agree with you that reports of " emotional stress " around time of onset are significant. Not as indicators of a weak mind preparing to succumb to somatization disorder, but as a person wavering on the edge of MCS. I have learned to become grateful for the gift of Depression, because by paying attention to its earliest signs, I have learned to avoid not just the " emotional " aspect of the response, but the later intense inflammatory response that leads to further damage and pain and fatigue. Now that I have learned to recognize the signs, I can look back over many instances in which I remembered being emotionally overpowered, but in specific locations and under certain circumstances that represented a toxic response. It wasn't my mental state, it was a toxic response. I have accompanied enough CFS friends into areas of toxic mold and watched their Depression response kick in to see that there is one hell of a basis to consider that Depression in CFS is purely a result of chemical sensitivity. If you could see how I use Depression as a useful warning of impending inflammatory overresponse, you would know why I am so adamant that the role of " stress " in CFS is misunderstood. And since Dr Cheney stole so much of my blood to help prove his point about this illness being nonEBV, I think at least I deserve to have theories of etiology at least make an attempt to include me. So There! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Hi, , > > , > > > > At the risk of having you attempt to modify my " posterior orifice " > > as you put it, let me pass on some of the results of a CFS > > triggering factors study that was published by P. De Becker, N. > > McGregor and K. De Meirleir (Journal of CFS 10(2)2002, pp. 3-18). > > > > In this work, they studied 1,546 PWCs and 309 patients who were > > fatigued but did not meet the criteria for CFS. They interviewed > > them to get their histories, and they also made use of their lab > > tests, to determine what factors contributed to the onset of their > > illness. > > > > They came up with a total of 26 different triggering factors, the > > ones occurring most often being upper respiratory tract > > infection, " unknown gradual onset, " flu-like illness, viral > > infection, and other infection (bacterial). After these factors, > > the one mentioned next most frequently was " stress. " This one was > > reported to have been significant in nearly 10% of the PWCs who met > > the Fukuda et al. criteria for CFS. Stress was found to be 4.5 > > times as likely a significant triggering factor in the PWCs as in > > those with non-CFS fatigue. > > > > The point I want to make here is one I have tried to make before. > > That is that emotional stress is not a factor in the onset of every > > case of CFS. I know that you aren't fond of the term subsets, so > > call them groupings, if you want, but the point is that every > > person's experience isn't the same. If these results are accurate, > > we might say that stress wasn't a significant factor in 90% of the > > cases they studied, at least by the self-reports of the PWCs and the > > appraisal of the doctors. However, it was a factor in some cases, > > and I would say that of the cases I have studied in detail myself, > > it was a factor in more than 10%. > > > > I'm perfectly prepared to believe that emotional stress was not a > > factor in the onset of your illness if you say it wasn't. However, > > I don't think it's valid to generalize your own personal experience > > to all PWCs, because there is quite a range in experience. > > > > And by the way, suffering from emotional stress is not a character > > flaw. We all have different emotional makeups. > > > > Rich > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Hello , This is illuminating. Thank you for sharing your insight. I have never thought of MCS being intuitive in this way. rb erik_johnson_96140 wrote: > I agree that stress is a factor, but not in the way people think of it > as an immune depressing causative factor. At the moment you were > feeling the onset of CFS if you had only thunk happy thoughts, could > it all have been avoided? > I know all too well the overpowering nature of depression and there is > no way in hell you can " happythink " your way out of it. > Then I discovered that while sadness and grief are reasonable emotions > to feel in the face of having your life stolen from you, my > overpowering suicidal depressive thoughts seemed to " come out of > nowhere " . But that " nowhere " had a pattern. > My depression never corresponded to any emotional stimulus but had a > perfect correlation to the inflammatory response to chemical > irritants. > The incredible correlation of my depression to toxic exposure made me > wonder if perhaps the entire basis of depression is misunderstood. > If nature wanted to induce an animal to change its location or eating > habits to avoid toxic exposures, what " emotions " would serve better > than anxiety and depression? > I decided to treat my anx/dep response as an indicator of toxic > exposure and do whatever it takes to avoid areas and objects that > induced a " mood change " . > As I described to you, the results were spectacular. > Far from being a useless by-product of emotional instability, the > Anx/Dep response turned out to be my most useful tool for avoiding > toxic exposure and relief of CFS symptoms. > So I agree with you that reports of " emotional stress " around time of > onset are significant. Not as indicators of a weak mind preparing to > succumb to somatization disorder, but as a person wavering on the edge > of MCS. > I have learned to become grateful for the gift of Depression, because > by paying attention to its earliest signs, I have learned to avoid not > just the " emotional " aspect of the response, but the later intense > inflammatory response that leads to further damage and pain and > fatigue. > Now that I have learned to recognize the signs, I can look back over > many instances in which I remembered being emotionally overpowered, > but in specific locations and under certain circumstances that > represented a toxic response. > It wasn't my mental state, it was a toxic response. > I have accompanied enough CFS friends into areas of toxic mold and > watched their Depression response kick in to see that there is one > hell of a basis to consider that Depression in CFS is purely a result > of chemical sensitivity. > If you could see how I use Depression as a useful warning of impending > inflammatory overresponse, you would know why I am so adamant that the > role of " stress " in CFS is misunderstood. > And since Dr Cheney stole so much of my blood to help prove his point > about this illness being nonEBV, I think at least I deserve to have > theories of etiology at least make an attempt to include me. > So There! > - -- " A bit of fragrance always clings to the hand that gives the rose. " -- Chinese proverb http://members.aol.com/naryaclue/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 > And since Dr Cheney stole so much of my blood to help prove his point > about this illness being nonEBV, I think at least I deserve to have > theories of etiology at least make an attempt to include me. > So There! > - Hi , I was just wondering what yr. you saw Dr.Cheney and found him trying to prove this illness is non-EBV. My first app't with him was in Nov. 1990. My EBV count was too high for the lab to measure and he continues to refer to my high viral count/s. I had others too but he was amazed about the EVB. I have always felt he was open to the notion of " many " causes of CFIDS. Any antivirals that he feels will help, ie: Isoprinosine at doses of 6,6,6,6,6,,2,2, schedule.( as of 6-30-03 ) Kutapressin injections helped me alot then sort of lost some effectiveness and also Ins. stopped payment of that. I, however, am sympathetic to your frustration of this horrible illess. (yes, I already know, this is not a support group ) I am very nurturing by nature. Wishing you better health. Betty from Tn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 I saw Dr Cheney in 1984 before he knew about the epidemic. He didn't know what was wrong with me so I went around to other doctors until He and Dr identified the epidemic. I didn't have to go too far to see him. My house was directly behind his office in Carnelian Bay. Unless you've read Osler's Web you can't believe how vicious people were, toward Dr Cheney and Dr , and toward us. Some people came to support groups under an assumed name or didn't come at all for fear that others would find out. All the other doctors and community leaders accused us of having some bizarre agenda of trying to destroy the economy at Incline Village and wanted us all to leave. This illness unveils a savage, merciless, evil side of humanity that none of us ever wanted to find out about. -i Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 > This illness unveils a savage, merciless, evil side of humanity that > none of us ever wanted to find out about. > > -i , this is something I've also said many many times. It brings out a side of human nature nobody should have to see. Attack the weak. EVEN your so called friends, family and 'caring medical system'. And when you see it as it is......you are 'just depressed', take these mind pills and go home. They just don't get it. Marcia Quote Link to comment Share on other sites More sharing options...
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