Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Hi,Cort. <cortttt@...> wrote: > > I dont think anyone KNOWS what CFS is! ***Many of us do, we're living it and KNOW the difference between things that are meaningfully impacted by alterations in thoughts, emotions, etc, and symptoms that are not. It's obvious to us, our core CFS symptoms are utterly and completely independent of psychological mechanisms that others IMAGINE must be connected. They're collapsing paradigms and not recognizing it, which is both blunderous and tragic, especially if they're a researcher who should know better. There may be a persistent viral infection in some people and not in others. Immune abnormalities may be allowing the infection while HPA axis abnormalities do in others. Then theres the sympathetic nervous system - another immune regulator - maybe thats the key for some people. Or maybe all these different stressors somehow cause damage to the same part of the brain and thats CFS. The 'truth is' that there is no settled truth about CFS. Some people have high titers of various pathogens and can be helped by antivirals and alot of people dont and cant. ***Well, there a 'truth is' about CFS in this last sentence of yours and it's significant. Those some that do respond to antivirals may be actual CFS and there may be greater responses, more actual PWCs to cure, with such meds among the ones that don't now if research ever got beyond their anaemic level of commitment to this field. > > I would strongly disagree with your idea that Lloyds research is 'bogus' (and why use a word like that anyway?) ***Because it's accurate. It's a great word to represent the unreality of the Dubbo work, particularly the basis of the work and what it's attempting to say about CFS rather than the technical execution of the study itself. ***And I actually talked to Dr Lloyd myself about this and here is something very telling that he said, " ...The outcomes in subjects in the Dubbo Study suggest only ~2% have significant ilness beyond 2 years (post onset of infection) - the remainder have recovered entirely. " Virtually 100% " entire " recovery in the first two years is not the same CFS diagnosis here on these lists and what I find in person with fellow PWCs. ***Also, an actual medical researcher with an M.D. who has CFS that I met in a N. Cal advocacy group had this to say in response to this data from Dr Lloyd's emails to me, " Thanks for writing Dr. Lloyd, ...These are huge numbers and don't match what we've seen...This confirms my suspicions. I thought they might be studying some type of post-viral fatigue syndrome but not what people are experiencing for 5, 10, 20 years... " Lts of people report they came down with CFS after getting mono! And several studies show that that is so. ***No. Lots of people were told they had EBV mono and this is what they report, but this is really flawed. Doctors generally aren't trained to know that the Monospot test, the thing they use at the point the patient shows up to confirm mono, is not specific for EBV. ***The Monospot itself actually measures a host of antibodies produced by B-cells and EBV is known to stimulate B-cells. However, there's no saying that another bug could have a similar effect on B-cells, like HHV-6, and therefore give a positive Monospot without EBV. ***The test used to confirm EBV infections in the Dubbo trials was IgM to EBV, which is very specific for EBV. So it's possible they were seeing actual " regular " EBV mono versus what we had or still have. ***And CMV is known to while HHV-6 is greatly suspected can produce a mono indistingishable to EBV mono. I would note that many CFS patients following the Incline Village outbreak were well in a couple of years. ***Well, looks like has provided a good reference saying no one since has gotten well. " None " is the quotation I see. > I would also note that Dr. Gupta does propose that brain damage is central to his hypothesis. Who'se to say that a central nervous infection caused by EBV (yes its found in the brain) or HHV-6 or another pathogen goes wild causing damage in the limbic region/brainstem?Numerous studies have found problems in those areas. > > Of course theres no scientific data - its never been tested. > > What is 'actual CFS'? You're drawing boundaries you really cant draw. ***No, I and many others are drawing them. They're there to be drawn and better, more substantive and rigorous research will help create a clearer picture of what we're already seeing if not completely new surprises to crystallize the whole thing. Somehow I doubt those people who have endured years if not decades of problems after monocleosis failed to resolve have 'super common chronic fatigue'. I doubt Dorothy Walls does. ***See above. This chronic fatigue vs CFS is a distinction that is in vogue now but its essentially meaningless; there's no definition for it. It allows people to attach the CF label to a study or outcome they dont like. ***The key is really what CFS is and the heart of it is NOT about the symptom of chronic fatigue. That symptom is meaningless to what the real trouble is in CFS(may be you don't have this, but many PWCs know exactly what I'm talking about and it's clear to many of us it isn't about ones mind or what the mind directly impacts). Thoughts actually do have power. should know that but he's forgotten it. ***Yes thoughts have power, even very profound power where they do and can. This I need no reminder for, but what you're failing to hear is that whole paradigm of thought and culture of thinking around it has had ZERO impact on dissolving core CFS pathology for me and others. You and others might IMAGINE it could or even should for CFS, but this is exactly the collapsed paradigms point I made above. Anything that helps out those with this disease should be rewarded - not rejected simply because it doesnt fit with ones belief system. ***Well, this list isn't about little helpers as I said earlier in this thread even though those kinds of things are fine and, I agree, should not be rejected. However, this list is about remission possible treatments which this training is being promoted as and therefore should be challenged on that basis. ***Sometimes an observation comes from ones believe system and sometimes not. Sometimes an observation transcends belief, it's above the line and really what's so. *** Quote Link to comment Share on other sites More sharing options...
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