Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Research has shown that CFS symptoms were described through history. I've had it since the 1950's, when they knew little of genetics, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 That's why I call the Incline Village epidemic; " The beginning of public awareness of CFS " . I've based some of my concepts of CFS as an illness that has had a wild increase in prevalence based on the notion that something as horrific as this couldn't possibly have been ignored. Even if they had no clue, how could people be so oblivious as to say that they never heard anybody complain of such a thing if this existed in any significant numbers in the population? However I am forced to admit that " friends " , family, physicians and humans in general have demonstrated that they can watch a million people go down with this illness and pretend they see nothing. After witnessing the degree of denial that people have proven they are capable of, it seems conceivable that this illness could have destroyed the lives of millions and every single person could have been told that they are the only one with such unbelievable symptoms. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2004 Report Share Posted May 22, 2004 > > Where we start going round in circles again is when you start to extend > your experience with a sudden onset cluster to the diagnosis of CFS. > > Let me repeat yet again that a word is used how it's used and if you want > to know what CFS means TODAY, look at the diagnostic criteria currently in > use and the patient population. > > Sudden onset in clusters is not part of the diagnostic criteria and the > overwhelming majority who carry this label are now, as I say, either > gradual onset or onset with antecedents. Rob, it doesn't matter since the cluster incidents supercede the individual onset cases in terms of specificity. Unless you can demonstrate that all these " genetic susceptibility canaries " have the incredible propensity for grouping themselves together, the statistical improbability of " canary clusters " suggests that the mechanism for creation of this illness overpowers variabilities of individual immunity. The very fact that this illness can sweep through communities in large clusters in such an unprecedented manner means that even though canaries may be susceptible, the illness has the capacity to transcend that factor. When something breaks the rules or doesn't fit the conceptual model you have laid out for it, you must question why. The threory must fit ALL the facts. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2004 Report Share Posted May 22, 2004 keep talking about " this illness " as though we're all the same, and > there's no justification for saying that. Please re-read my posts. I'm > sorry but I don't know how to explain myself any clearer. > > It's as though you have a psychological blockage about letting go of the > idea that your illness defines what is now a very large and diverse > patient population. There are at least the two subgroups that I've > indicated and most likely other subgroups too. Rob, you have made yourself very clear. You think that CFS is a perfectly normal result of people with an inherent predisposition succumbing to exposures and stressors that others endure, even though these exposures and stressors have no history of consistently causing CFS. You make no attempt to explain why these predisposing factors did not result in clusters of CFS consistently enough to be associated with these " stresses " or exposures. You have a psychological blockage of comprehending that I was used as a prototypical case of CFS for defining the parameters of the illness and that therefore CFS of the class that compares itself to the type that spread through Incline is comparing their condition to me and should attempt to establish some level or concurrency. " This Illness " is the one described in Oslers Web and innumerable other places and is generally recognised as representative of CFS, at the very least, as a valid subgroup since it was used to develope the illness model. Even disregarding my case, you fail to understand that if the illness has the capacity to overwhelm people in groups, that the idea of a inherent predisposition can only possibly fit if the that group met the statistical improbability of consisting entirely of " canaries " . It is not impossible that this could be the case, but the unlikely nature of this occurance demands an explanation. You entirely ignore virtually all the clusters of CFS in which the cohort predominated of those who had no apparent immunosuppressive condition. Do you believe that since these clusters do not fit your model, that they must be another illness, even though they are the very outbreaks that were used to model the illness? Your hypothesis can only be supported by discarding every example that contradicts it even though these are the examples that the illness was based on. I ask you to make your illness model fit at least one group of people that researchers used to define the illness and your answer is that these disparate illnesses cannot be compared as they consist of separate etiologies. Since the word " syndrome " meaning " concurrency " is used to describe the illness, the only thing we have to compare is similarities. Yet you seem to think that there can be no valid comparision between subsets. If you don't recognize the comparison and the concurrency that constitutes the " syndrome " in CFS, then your basic premise is that there is no syndrome at all and that everybody is just falling apart as a part of normal life and that the proximity of those in clusters and the similarity of symptoms is nothing more than a coincidence. What I saw was an epidemic and our symptoms were extremely comparable. Explain how canaries occur in clusters. Explain why sick people avoided CFS while athletes succumbed. Explain why CFS is so completely unknown if those inherent susceptibilities and stressors were preexisting. Instead of telling me I don't understand, explain the discrepancies. Make the theory fit the facts. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 Rob, EXCEEDINGLY well stated. It is truly infuriatiating to someone who has experienced " Ramsay ME " to have people who are comfortable with fatigue as a description of their symptoms treat the illness as comparable. Though I believe you are right about the precursor condition. It would be consistent with my experience to change the name of the Incline Village syndrome to ME and call the precursor " susceptibility " : CFS. I believe that the subsets will eventually be united by this precursor condition. If you remember my description of " The Truckee Crud " which corresponded to the infection identified by Dr as HHV6a, there was also a simultaneous manifestation of a " Precursor " or " Antecedent CFS " state in which people started succumbing to " stresses " or exposures which had never bothered anybody before. There was a striking increase in sinus infections, depression and chemical sensitivities even though these people didn't develope " Ramsay style ME " . The reason I fight the " canary concept " so hard is that the presumption is that these susceptibilities are the result of toxic overload or lifestyle or perhaps pre-existing genetic susceptibilites in response to a toxic exposure if they have a sudden onset. But what I saw is the creation of a manifestation of subtle susceptibilities in a very pristine setting among people with a strong dedication to a healthy lifestyle afer a flu like illness passed through. That suggests to me that the susceptibility/precursor condition still doesn't meet the model for " toxic overload " while a post infection syndrome does. If the susceptibility was an inherited genetic predisposition, the failure of the syndrome to manifest under conditions of stress and toxic exposure in a consistent way in the past suggests that " something changed " . The spread of complaints under these conditions matches the model of a contagious organism more than environmental factors - though the environmental factors play enough of a part to be the symptom inducers and receive the blame for causation. Like my story about blaming the car that happened to be on the bridge when it collapsed. Yes the car was the trigger. No it cannot be the cause because cars are well known not to be bridge collapsers. Thanks for your well considered response. - Quote Link to comment Share on other sites More sharing options...
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