Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Hi Cort, If you've never read or heard of Dr. Jay Goldstein check him out. He's retired now , but wrote a book about CFS call " Betrayal by the Brain " He didn't link it with autism, but he did think that the brain was the central issue of the problem. He also wrote " Chronic Fatitigue Syndrome: the limbic hypothosis " They're very technical, but he was a brilliant researcher and was pretty much poo pooed in the CFS community for a while. It's drug oriented approach, but that was many years ago. tansyap <tansyap@...> wrote: Hi Cort I don't think anyone is asking for a huge leap in faith, nor to see autism, ME, and CFS as the same illness. I am sure you are aware of Professor Malcolm Hooper in the UK. He recognises both the overlaps, and distinctive specific features, in autism, GWS, OPP, MCS, ME, and CFS. A brief overview of some of his work can be seen at http://www.ahummingbirdsguide.com/whooper.htm Professor Hooper and his colleagues have probably done more than anyone else in the UK to get ME recognised as a distinctive physical illness; but he also writes and talks about shared features present in other chronic illnesses. He recognises the roles of toxins and infections. As I see it Dr Yasko and Rich are not saying autism and ME (CFS) are the same illness; instead they are exploring shared inherited factors that can lead to the development of neurological illnesses. The posts here are also making sense of different reactions to glutathione, my RBC glutathione levels were low, but using the methods usually recommended to raise glutathione levels, backfired on me. I am beginning to comprehend why. I think understanding weaknesses and blocks in various pathways has the potential to provide a valuable adjunct to other protocols, and in some cases could work as a stand alone. TC, Tansy -- In , cort johnson <cortttt@...> wrote: > > I just think it takes a huge leap of faith to believe that autism - one of the most profoundly disturbing brain diseases - and CFS are similar in pathology. Rich got interested in autism by learning that glutathione can be helpful in autism. But does this mean the two have similar causes? That GSH is depleted in both? Or is it more likely at this point thiat they share another common factor such as increased oxidative stress? > > We know that glutathione is very helpful in some CFS patients, moderately helpful in others and not helpful in others. The research evidence for low glutathione levels in CFS is very mixed with most studies showing normal glutathione levels. This is not to say GSH cannot be very helpful in CFS; CFS has consistently been shown to be a disease of high oxidative stress and GSH is the main detoxifier in the body - it stands to reason that it would be helpful. I wouldn't be surprised if GSH supplementation helps to some degree in many chronic diseases. Whether or not it is central in CFS is an entirely different proposal. > > To be blunt about it a good number of studies have looked at antioxidants levels (GSH included) and there doesn't seem to be a rush in the research community to study it. - we are the ones that are most interested in it. Even Dr. Cheney - who brought whey protein to the fore in CFS - did not list it among his top 4 treatments. I know there are people who have gotten a great deal of help from glutathione - I dont want to dissuade anybody from trying this excellent compound - but I dont see the evidence that indicates it is central to CFS . > > While it is true that autistic people share some symptoms with CFS patients so do fibromyalgia syndrome patients, irritable bowel syndrome patients, myofascial pain syndrome and people with overtraining syndorme. The symptomatic overlap between overlap between orthostatic intolerance and CFS is simply amazing. Besides their movement difficulties MS patients can experience overwhelming fatigue. CFS patients also share numerous symptoms with what is called 'sickness behavior' - which refers to the acute stages of infection we are all familiar with. Most of the symptoms in CFS are fairly and a fair number of diseases have many of them. It would be interesting to see in post exertional fatigue is present in autism - it appears to be in FMS. > > I dont know alot about methylation - I'm waiting for Rich to write a paper on it - but I would not go so far to say that every CFS patient has problems with methylation. I would suggest that some do and treatments based on those problems will be helpful in that case. > > I think the methylation treatments will be like many treatment protocols; each one helps some people in a moderate degree, a few people will luck out and get really well and some wont get much of a response to it at all. Why do I think t hat? Because there is little evidence as yet that CFS is truly a hereditary disorder - the twin studies certainly dont show that. Does this mean heredity doesnt play a role? No, hereditary does play some role and it will good to know what role it plays but it is not determinative. Just on personal level - my twin brother does not have CFS. Somewhere along the line I bumped into something really bad and he didnt - that I think is the difference between us two. > > I think theres a long long way to go on our journey to understand CFS. I dont think its going to be this easy. I do think that detoxification is very important, however, and if methylation fits into this detoxification scenario, then treatments addressing it, along with GSH, will be another valuable addition to the CFS treatment regime. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 > > > > I just think it takes a huge leap of faith to believe that autism - > one of the most profoundly disturbing brain diseases - and CFS are > similar in pathology. Rich got interested in autism by learning that > glutathione can be helpful in autism. But does this mean the two have > similar causes? That GSH is depleted in both? Or is it more likely at > this point thiat they share another common factor such as increased > oxidative stress? > > > > We know that glutathione is very helpful in some CFS patients, > moderately helpful in others and not helpful in others. The research > evidence for low glutathione levels in CFS is very mixed with most > studies showing normal glutathione levels. This is not to say GSH > cannot be very helpful in CFS; CFS has consistently been shown to be > a disease of high oxidative stress and GSH is the main detoxifier in > the body - it stands to reason that it would be helpful. I wouldn't > be surprised if GSH supplementation helps to some degree in many > chronic diseases. Whether or not it is central in CFS is an entirely > different proposal. > > > > To be blunt about it a good number of studies have looked at > antioxidants levels (GSH included) and there doesn't seem to be a > rush in the research community to study it. - we are the ones that > are most interested in it. Even Dr. Cheney - who brought whey protein > to the fore in CFS - did not list it among his top 4 treatments. I > know there are people who have gotten a great deal of help from > glutathione - I dont want to dissuade anybody from trying this > excellent compound - but I dont see the evidence that indicates it is > central to CFS . > > > > While it is true that autistic people share some symptoms with > CFS patients so do fibromyalgia syndrome patients, irritable bowel > syndrome patients, myofascial pain syndrome and people with > overtraining syndorme. The symptomatic overlap between overlap > between orthostatic intolerance and CFS is simply amazing. Besides > their movement difficulties MS patients can experience overwhelming > fatigue. CFS patients also share numerous symptoms with what is > called 'sickness behavior' - which refers to the acute stages of > infection we are all familiar with. Most of the symptoms in CFS are > fairly and a fair number of diseases have many of them. It would be > interesting to see in post exertional fatigue is present in autism - > it appears to be in FMS. > > > > I dont know alot about methylation - I'm waiting for Rich to > write a paper on it - but I would not go so far to say that every CFS > patient has problems with methylation. I would suggest that some do > and treatments based on those problems will be helpful in that case. > > > > I think the methylation treatments will be like many treatment > protocols; each one helps some people in a moderate degree, a few > people will luck out and get really well and some wont get much of a > response to it at all. Why do I think t hat? Because there is little > evidence as yet that CFS is truly a hereditary disorder - the twin > studies certainly dont show that. Does this mean heredity doesnt > play a role? No, hereditary does play some role and it will good to > know what role it plays but it is not determinative. Just on personal > level - my twin brother does not have CFS. Somewhere along the line I > bumped into something really bad and he didnt - that I think is the > difference between us two. > > > > I think theres a long long way to go on our journey to understand > CFS. I dont think its going to be this easy. I do think that > detoxification is very important, however, and if methylation fits > into this detoxification scenario, then treatments addressing it, > along with GSH, will be another valuable addition to the CFS > treatment regime. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Katrina Specialists in ME, by which I mean both sudden onset/gradual onset and the original Ramsay definition, have speculated there may be a genetic disposition ie susceptibility based on their observations and decades of experience. As yet we are learning more about what is going wrong not why. Outbreaks are easier to define than clusters and sporadic cases; but the latter are more frequent. I live in the UK so I am very aware of how PWME feel, but is what I wrote here so different from what Professor Hoooper has been saying? He has been at the forefront of getting ME disengaged from idiopathic chronic fatigue states and Wessely et al's functional somatic disorders, his work on our behalves is based on good science and research. Most ME specialists don't consider this to be genetics plus stress and emotions, and I don't see that in Dr Amy's work either since she quotes infections, vaccines, and toxins. In the UK infections, vaccines, and toxins have been linked with the onset or worsening of ME. It's not unusual for this kind of response to possible Tx for ME and CFIDS/CFS, or for suggestions on what may help alleviate the severity of some symptoms. I dislike the inferences that if you don't do x, y or z you don't want to get better as much as you do; but that does not stop me exploring, debating and considering anything that brings about light bulb moments. What most of us want is access to information so we can make up our own minds. ME specialists, and PWME representatives at the recent Gibson Enquiry, have pointed out that many do not just have ME or CFS/CFIDS. So maybe in a number of genuine cases of ME and CFIDS/CFS it's not a case of either and or, but a combination of factors including those being discussed here currently and in the past. TC, Tansy > > > > Hi Cort > HI Tansy, > > > > >>>>I don't think anyone is asking for a huge leap in faith, nor to see autism, ME, and CFS as the same illness.<<<<<< > > Tansy, > > In fact, the dominant theme here for many weeks DOES require that giant leap. Rich has said quite clearly that he belives autism and CFS (for different reasons) are the same thing. > > Other giant leaps of the dominant theme of the last weeks/months on : > > That Chronic Fatigue Syndrome > is caused by inherited genes, stress and emotions. That is a *very debatable* premise. It has been discussed and rejected many times here and ME/CFS world. > > Basically allopathic load, which is exactly what the CDC has just announced. The problem there is that they were not apparently studying the population for which the name CFS was first invented (ME/CFIDS/CFS patients, most of whom became devastatingly ill overnight in a big epidemic, tho some were slower onset). And by and for whom this list was formed. > Instead, were studying some mixture of fatigued, " CFS-Like " persons (their words). > > There is no major ME/CFS Researcher that I have ever heard of who believes that CFS is inherited genes and allopathic/emotional load only. > > Rich has also clearly said that his theories are not addressing > sudden viral onset CFS. But the wider (and ever widening) category now under the the umbrella of " CFS " known as the " Fukuda " (CDC) definition. That his thoughts are " in progress " and that he is using the list as his laboratory. > > You have to understand that the gene/allopathic thing is particulary a sore spot at the moment because: > Millions of $$$ going into this theory is money not going into other promising work and impressive findings in CFS. > > And the CDCs answer to this for us is going to be CFS clinics administering or even REQUIRING Cognitive Behavioral Therapy for PWCs. Exactly what is being done in the UK to ME/CFS men, women, and children. > > This approach and dominance is also dismissing or minimising the contributions of the World's 2+ decades of ME/CFS Reseachers, patients, current work and treatmnts. (But some of which BTW, is very like Yasko's) > They are now shot down on this list in 5 minutes, leaving mis- characterizations of them, and the false impression that they aren't getting anywhere. Very unfair to both new and long-term patients. And guranteeing our ignorance and being out of the medical and ME/CFS loop and progress, btw. > > Including Cardiac, Neurological, Immune, and more. ANd includes gene expression, which some find extremely exciting, for CFS and all diseases. > (Personally, I think the field of Neurogenesis is very exciting, and appopos, due to amyloid protein findings, brain,neuron and muscle damage in CFS). > Whatever happened to the CDC's finding that the Huntington's protein is over expressed in CFS?? > > Another giant leap of the dominent theme here is that this/Yasko is " the answer " , " the cure " . (And that you're a dufuus if you don't believe it lol) Tho this has been said about MANY, MANY theories over the years, this has been one of the most manic,least challenged and hardest sells I have ever seen here. > > And this, UNLIKE all of the others, with ZERO evidence, ZERO persons here cured, or even in remission from doing it! > > In addition, during part of this frenzy, it has been implied, nearly directly stated, (I don't mean by Rich) , that if one does not jump on-board, they do not want to get well!! > > That is one of the oldest, and meanest things that have been said to PWCs for the last 2 decades, regarding any number of theories, that are the speaking person's current (usually very expensive) passion. > > All of this is a far cry from what you cited as there being overlaps with Autism, or that CFS is believed to be a brain disease. (Which it is, by many). > We would therefore have an overlap with many brain diseases, and since we have a multi-system disease, an overlap with many diseases. That is very different from being the " same disease " , which has been stated by many, many others, over the years. (Candida/Yeast, CEBV, MCS, FM, Amalgams,Lyme, Psych/stress/Immune, Mold, EMFs,etc.) > > At least in those cases, there were people actually cured or in remission by treating those things. And teach us a great deal about each that can help us. > > Also, some of you on the list have been referring to Rich as God, Doctor, Geneticist, Pathologist, none of which he is, or has claimed to be.( um, I don't think) > > { I didn't much like the theme either that the most articulate and least cognitively impaired are the geniouses, and the rest are the dummies. Some of the slowest processing, most cognitively impaired (or with least $$ resources) here have some of the best knowledge of CFS discoveries, and for TREATING this disease) > > There is nothing wrong with what Rich is studying or Yasko is doing, and it seems to be very valuable work. > > Maybe for some, with genes/allopathic load, it will actually be curative. ANd for *anyone*, it would be valuable to find what food, supplements, and medications are healing or blocking to healing and why. > My neighbor, who is an Acupuncturest, offered a few months ago to do similar testing for me at his special rates. > > Rich has been great at taking the time to expand upon and explain these pathways, although my CFIDS brain can't possibly get it quickly. > > But yes, great leaps of faith and totally closed doors to other theories ARE required to sign on to this one, *as presented*. Plus everything else that comes on the list seems to now require filtering/approval through this view it seems. > > The Moderators post was no different for Yasko than any other theory here. ANd has been generously done by many other (much more depleted) patients who were working on something...presenting the theory and their specific results in a straight forward manner...sans the hard sell, personal pressure, for instance. > Once again, listmembers with other needs and views are going backchannel and underground to seek or share their information, which is be very tedious and draining, and limits the lists' exposure to it. > > Someone who posted here, seeking help for a very severe patient was met with.... " sounds grim, only prayer will help. " > > A brand new person was told only that listmembers are doing a program that they/we think will cure us. Maybe that was OK, but why should they listen to anything else, then, that might help them *today*? > > ... THere are multiple other forums > for Yasko, Autism, and other angles. This is the largest, and *the only* one for most for treatment only of ME/CFIDS/CFS, involving many many theories and many treatments. > > Katrina > > P.S. I agree that Prof Hooper has been a blessed advocate, and Dr. Goldstein's brain work did help alot of people. > > > I am sure you are aware of Professor Malcolm Hooper in the UK. He > > recognises both the overlaps, and distinctive specific features, in > > autism, GWS, OPP, MCS, ME, and CFS. A brief overview of some of his > > work can be seen at http://www.ahummingbirdsguide.com/whooper.htm > > > > Professor Hooper and his colleagues have probably done more than > > anyone else in the UK to get ME recognised as a distinctive physical > > illness; but he also writes and talks about shared features present > > in other chronic illnesses. He recognises the roles of toxins and > > infections. > > > > As I see it Dr Yasko and Rich are not saying autism and ME (CFS) are > > the same illness; instead they are exploring shared inherited factors > > that can lead to the development of neurological illnesses. The posts > > here are also making sense of different reactions to glutathione, my > > RBC glutathione levels were low, but using the methods usually > > recommended to raise glutathione levels, backfired on me. I am > > beginning to comprehend why. > > > > I think understanding weaknesses and blocks in various pathways has > > the potential to provide a valuable adjunct to other protocols, and > > in some cases could work as a stand alone. > > > > TC, Tansy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Tansy, I don't disagree with anything you said, and I apologise if it seemed I was aiming everything at you. Yes, genetics have always been said to be a co-factor for suceptibility and most of us have overlapping conditions now, even if not at the beginning. due to ongoing damage. I have a number of things going on, most not seen in one single other family member/relative. I just meant that I felt some things have been overreaching, or only apply to some, or shut out other important views. I have alot of backchannel posts stating same. It doesn't mean there is not value in current theme...that would be extreme in the other direction. Katrina > > Katrina > > Specialists in ME, by which I mean both sudden onset/gradual onset > and the original Ramsay definition, have speculated there may be a > genetic disposition ie susceptibility based on their observations and > decades of experience. > > As yet we are learning more about what is going wrong not why. > Outbreaks are easier to define than clusters and sporadic cases; but > the latter are more frequent. > > I live in the UK so I am very aware of how PWME feel, but is what I > wrote here so different from what Professor Hoooper has been saying? > He has been at the forefront of getting ME disengaged from idiopathic > chronic fatigue states and Wessely et al's functional somatic > disorders, his work on our behalves is based on good science and > research. > > Most ME specialists don't consider this to be genetics plus stress > and emotions, and I don't see that in Dr Amy's work either since she > quotes infections, vaccines, and toxins. In the UK infections, > vaccines, and toxins have been linked with the onset or worsening of > ME. > > It's not unusual for this kind of response to possible Tx for ME and > CFIDS/CFS, or for suggestions on what may help alleviate the severity > of some symptoms. I dislike the inferences that if you don't do x, y > or z you don't want to get better as much as you do; but that does > not stop me exploring, debating and considering anything that brings > about light bulb moments. > > What most of us want is access to information so we can make up our > own minds. > > ME specialists, and PWME representatives at the recent Gibson > Enquiry, have pointed out that many do not just have ME or CFS/CFIDS. > So maybe in a number of genuine cases of ME and CFIDS/CFS it's not a > case of either and or, but a combination of factors including those > being discussed here currently and in the past. > > TC, Tansy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Katrina-this is an excellent summary of the topics that have been discussed here in the last month or so. You also explained very well that this list is about all theories, not just what one might see in recent posts, especially for a new member. I think we should all consider that there are some great minds at work on this list and all treatments can be discussed. I am always concerned that a new member might be 'turned off' if they just read a few pages of messages and don't realize that we discuss any treatment. Mike C. (end of off topic message) > > > > Hi Cort > HI Tansy, > > > > >>>>I don't think anyone is asking for a huge leap in faith, nor to see autism, ME, and CFS as the same illness.<<<<<< > > Tansy, > > In fact, the dominant theme here for many weeks DOES require that giant leap. Rich has said quite clearly that he belives autism and CFS (for different reasons) are the same thing. > > Other giant leaps of the dominant theme of the last weeks/months on : > > That Chronic Fatigue Syndrome > is caused by inherited genes, stress and emotions. That is a *very debatable* premise. It has been discussed and rejected many times here and ME/CFS world. > > Basically allopathic load, which is exactly what the CDC has just announced. The problem there is that they were not apparently studying the population for which the name CFS was first invented (ME/CFIDS/CFS patients, most of whom became devastatingly ill overnight in a big epidemic, tho some were slower onset). And by and for whom this list was formed. > Instead, were studying some mixture of fatigued, " CFS-Like " persons (their words). > > There is no major ME/CFS Researcher that I have ever heard of who believes that CFS is inherited genes and allopathic/emotional load only. >>>>snip<<<<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2006 Report Share Posted August 15, 2006 Hi, Katrina. I hope that someday you will stop pulling your punches and tell us how you REALly feel! (:-) > Tansy, > > In fact, the dominant theme here for many weeks DOES require that giant leap. Rich has said quite clearly that he belives autism and CFS (for different reasons) are the same thing. ***Yes, there is a bit of a leap there, but once you've made the leap and look back at the chasm, it doesn't look nearly as wide as it did before! > > Other giant leaps of the dominant theme of the last weeks/months on : > > That Chronic Fatigue Syndrome > is caused by inherited genes, stress and emotions. That is a *very debatable* premise. It has been discussed and rejected many times here and ME/CFS world. ***Hang on a minute, there, Katrina. If you're referring to what I've been talking about, that isn't exactly what I've been saying. Yes, I believe that inherited genetic variations are at the root of CFS for many PWCs. However, there are many circumstances in a person's life that will raise cortisol and deplete glutathione, which I believe are the biochemical factors that lead to the onset of CFS in a person who has the appropriate genetic variations. These circumstances can include physical, chemical, biological and psychological/emotional stressors. The particular combination of these circumstances is different for each case. Some probably don't involve psychological/emotional stress. Others clearly do. But it's the effects of these stressors on the biochemistry that is the key. > > Basically allopathic load, which is exactly what the CDC has just announced. ***If you understand allopathic load to include all the factors I've listed above, then yes, allopathic load, in combination with genetic predisposition, is one produces CFS onset for many PWCs. So long as you don't interpret allopathic load to be only caused by emotional stress. I don't see it that way. The problem there is that they were not apparently studying the population for which the name CFS was first invented (ME/CFIDS/CFS patients, most of whom became devastatingly ill overnight in a big epidemic, tho some were slower onset). And by and for whom this list was formed. > Instead, were studying some mixture of fatigued, " CFS-Like " persons (their words). ] ***The CFS case definition definitely has problems, as I discussed in my post to Cort. But it is true that the current case definition does include both epidemic and sporadic cases. > > There is no major ME/CFS Researcher that I have ever heard of who believes that CFS is inherited genes and allopathic/emotional load only. ***I don't know if there is or not. I certainly don't understand allopathic load as being due to emotional stress alone, and I don't think stress researchers in general see it that way. Certainly Bruce McEwen and Goldstein, who coined this term and defined it originally, don't see it that way. Emotional stress is a contributor, but not the whole story. Allopathic load includes everything to which the nonspecific stress response systems of the body respond. > > Rich has also clearly said that his theories are not addressing > sudden viral onset CFS. ***That's sort of what I said, but not exactly. I said that my hypothesis does not address the epidemic cases. There are many sporadic cases that begin with a sudden viral-type onset, and my hypothesis does include those who undergo sudden reactivation of a latent endogenous virus, which seems to occur in about half the cases that satisfy the Fukuda et al. criteria. but the wider (and ever widening) category now under the the umbrella of " CFS " known as the " Fukuda " (CDC) definition. That his thoughts are " in progress " and that he is using the list as his laboratory. *** " using " sounds a little indelicate. (:-) I like to think that I am also " being used. " Yes, I would say that my thinking is always in progress. Haven't yet found all the ultimate truth about this disorder. > > You have to understand that the gene/allopathic thing is particulary a sore spot at the moment because: > Millions of $$$ going into this theory is money not going into other promising work and impressive findings in CFS. ***I would like to see somewhat different research priorities, too. In particular, I would like to see certain additional parts of the genome explored for polymorphisms that are more frequent in PWCs, beside the neurotransmitter and stress response systems, though I do agree that they are important. > > And the CDCs answer to this for us is going to be CFS clinics administering or even REQUIRING Cognitive Behavioral Therapy for PWCs. Exactly what is being done in the UK to ME/CFS men, women, and children. ***I can't offer anything on that topic. I really don't know what they are planning to do. > > This approach and dominance is also dismissing or minimising the contributions of the World's 2+ decades of ME/CFS Reseachers, patients, current work and treatmnts. (But some of which BTW, is very like Yasko's) ***If you're referring to what I've been talking about here, I don't think that's true. What I've been doing is to study that whole body of work, as self-contradictory as it is, and try to develop a comprehensive hypothesis that incorporates it all, at least the actual observations, not necessarily the theories, many of which I don't believe are correct or are so limited that they really don't explain much. > They are now shot down on this list in 5 minutes, leaving mis- characterizations of them, and the false impression that they aren't getting anywhere. Very unfair to both new and long-term patients. And guranteeing our ignorance and being out of the medical and ME/CFS loop and progress, btw. ***I certainly don't want to be unfair to anybody. If you can get more specific here, I might be able to tell you if I agree or disagree with these contributions and why. I don't think it's unfair to do that. That's what scientific discourse is all about. > > Including Cardiac, Neurological, Immune, and more. ANd includes gene expression, which some find extremely exciting, for CFS and all diseases. ***O.K. Well, I think the glutathione depletion--methylation cycle block hypothesis encompasses the aspects of CFS from all those fields. I think they are all significant aspects. Perhaps the differences between my hypothesis and the ideas of others are in the realm of what causes what. I'm trying to put together a cause- effect tree that jibes with accepted biochemistry and physiology and also corresponds to the observed course of the illness. > (Personally, I think the field of Neurogenesis is very exciting, and appopos, due to amyloid protein findings, brain,neuron and muscle damage in CFS). ***Well, I'd like to hear more about that. > Whatever happened to the CDC's finding that the Huntington's protein is over expressed in CFS?? ***I don't know whether this observation has been replicated in the gene expression work that has come later or not. I think there was a misconception about this observation. It had nothing to do with implying that there was any connection between CFS and Huntington's disease. It was just that they found a difference in gene expression in the gene that is found to be abnormal in Huntington's disease. But the gene itself was not found to be abnormal in PWCs. > > Another giant leap of the dominent theme here is that this/Yasko is " the answer " , " the cure " . (And that you're a dufuus if you don't believe it lol) Tho this has been said about MANY, MANY theories over the years, this has been one of the most manic,least challenged and hardest sells I have ever seen here. ***Well, for what it's worth, I don't feel that way. Do I seem manic to you? I'll go with obsessed, but manic is a little strong, I think. With the heterogeneous population that we have in CFS under the current definition, I don't believe that one approach will help everyone. I do think that this one will help quite a few, though, and I'm excited about it for that reason. I'm really not trying to sell anything, but I am hoping to interest people in thinking this approach over seriously. I actually appreciate challenges, because that's how we test hypotheses. > > And this, UNLIKE all of the others, with ZERO evidence, ZERO persons here cured, or even in remission from doing it! ***I'm not sure it's unlike all the others in that regard. Most treatments for CFS have helped some with the quality of life, but cures have been few and far between. As far as evidence, I think there's actually quite a lot. I don't know whether you have been reading the case analyses I've been posting, but the pieces of evidence really do fit together quite well on many of them, I think. I think we are going to have to be patient a little longer to see the results in a number of people, because it takes time to shift the metabolism, which has been going in wrong directions for decades in some cases, back to the right directions. There is a lot of epigenetics that has to be changed. > > In addition, during part of this frenzy, it has been implied, nearly directly stated, (I don't mean by Rich) , that if one does not jump on-board, they do not want to get well!! ***Well, I certainly don't feel that way. I realize that different people are going to need differing amounts of evidence before they will be prepared to make a decision about this. I know that there have been a lot of disappointments and a lot of money spent on things that didn't help. I don't blame people at all for being skeptical and asking hard questions. I do the same to myself, even in my sleep! > > That is one of the oldest, and meanest things that have been said to PWCs for the last 2 decades, regarding any number of theories, that are the speaking person's current (usually very expensive) passion. ***I think that sometimes people are really trying to convince themselves when they imply things like that to others. It's not easy to step out on a limb, and once you've done it, it's hard to listen to people questioning you about what you've done, while you're still waiting to see results yourself. It's a stressful place to be. > > All of this is a far cry from what you cited as there being overlaps with Autism, or that CFS is believed to be a brain disease. (Which it is, by many). ***Well, I believe that there are major overlaps with autism, and there's no question that the brain is affected in CFS, though differently than it is in autism, by reason of the different ages at onset and the different status of brain development at those ages. I think the questions are about what causes the problems in the brain, and where does the disease process actually start? > We would therefore have an overlap with many brain diseases, and since we have a multi-system disease, an overlap with many diseases. That is very different from being the " same disease " , which has been stated by many, many others, over the years. (Candida/Yeast, CEBV, MCS, FM, Amalgams,Lyme, Psych/stress/Immune, Mold, EMFs,etc.) ***I believe that the genetic predisposition and much of the biochemistry are substantially the same in CFS and autism. There certainly are differences in the effects on the brain in the two, and again, I think that results from the different ages at onset. > > At least in those cases, there were people actually cured or in remission by treating those things. And teach us a great deal about each that can help us. ***If you're speaking of the list above, starting with Candida/Yeast, yes, some helpful treatments have been found for some of them. However, where these things have been comorbid with CFS, I think the root cause has often not been dealt with, so that the person is not really well, though the quality of life has certainly been improved by working on these things. > > Also, some of you on the list have been referring to Rich as God, Doctor, Geneticist, Pathologist, none of which he is, or has claimed to be.( um, I don't think) ***You got that last part right! > > { I didn't much like the theme either that the most articulate and least cognitively impaired are the geniouses, and the rest are the dummies. Some of the slowest processing, most cognitively impaired (or with least $$ resources) here have some of the best knowledge of CFS discoveries, and for TREATING this disease) ***Yes, they are veterans of a lot of prior battles, and I value their corporate memory and experience. > > There is nothing wrong with what Rich is studying or Yasko is doing, and it seems to be very valuable work. ***I'm sure there are some errors in it, and a lot that hasn't been discovered yet, but I'm hopeful that we are on the right track. > > Maybe for some, with genes/allopathic load, it will actually be curative. ANd for *anyone*, it would be valuable to find what food, supplements, and medications are healing or blocking to healing and why. ***As I say, I'm hopeful that it will be helpful to many. > My neighbor, who is an Acupuncturest, offered a few months ago to do similar testing for me at his special rates. > > Rich has been great at taking the time to expand upon and explain these pathways, although my CFIDS brain can't possibly get it quickly. ***There's a lot that comes in one side and goes out the other side of mine, too. > > But yes, great leaps of faith and totally closed doors to other theories ARE required to sign on to this one, *as presented*. Plus everything else that comes on the list seems to now require filtering/approval through this view it seems. ***Well, I don't see it that way myself. There are quite a few things that are raised that I don't comment on, because I don't think I understand them enough to make an intelligent contribution. It's true that I am trying to incorporate all genuine observations in CFS into a comprehensive hypothesis that can account for all of them, though. I'm sorry if that looks like filtering. I would call it incorporating. > > The Moderators post was no different for Yasko than any other theory here. ANd has been generously done by many other (much more depleted) patients who were working on something...presenting the theory and their specific results in a straight forward manner...sans the hard sell, personal pressure, for instance. ***I think we do need to be gentle with each other. > Once again, listmembers with other needs and views are going backchannel and underground to seek or share their information, which is be very tedious and draining, and limits the lists' exposure to it. ***I hope everyone will continue to feel that their views are welcome. > > Someone who posted here, seeking help for a very severe patient was met with.... " sounds grim, only prayer will help. " ***I don't recall that particular response, but I can tell you that I pray for a lot of people. I still support the philosophy of " Praise the Lord and pass the ammunition, " though. I think we have to try to figure things out and do what we can, but I don't plan to stop praying in addition. > > A brand new person was told only that listmembers are doing a program that they/we think will cure us. Maybe that was OK, but why should they listen to anything else, then, that might help them *today*? ***Well, I think we have to depend on each person to decide what they feel like listening to, and I agree that we need to make different ideas and views welcome here. > > ... THere are multiple other forums > for Yasko, Autism, and other angles. This is the largest, and *the only* one for most for treatment only of ME/CFIDS/CFS, involving many many theories and many treatments. ***Right on. I think that's a real strength of this group. The free marketplace of ideas, and all that. > > Katrina ***Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 > > > Tansy, > > > > In fact, the dominant theme here for many weeks DOES require that > giant leap. Rich has said quite clearly that he belives autism and > CFS (for different reasons) are the same thing. > > R: ***Yes, there is a bit of a leap there, but once you've made the > leap and look back at the chasm, it doesn't look nearly as wide as > it did before! K: Rich, I've been interested in CFS/Autism connection for 10 years. I have written about that several times on the list. And even discussed it with young adult Autistics who can communicate on-line. I have told some friends and family about it ( except for a couple of the closest, this does not go over very big). But, it's very specific elements, not the whole illness, that seemed similar. I asked once before, and still don't know, according to Amy, you, or patients...where are the tests of controls, healthy or other illnesses, that show these connections you see to be only between Autism and CFS specifically? What is the data that is tying these 2 specifically together, as opposed to other people, also ? Don't you need that to prove a hypothesis , or to make the statements that have been made? ................................. > > Other giant leaps of the dominant theme of the last weeks/months > on : > > > > That Chronic Fatigue Syndrome > > is caused by inherited genes, stress and emotions. That is a *very > debatable* premise. It has been discussed and rejected many times > here and ME/CFS world. > >R: ***Hang on a minute, there, Katrina. If you're referring to what > I've been talking about, that isn't exactly what I've been saying. > Yes, I believe that inherited genetic variations are at the root of > CFS for many PWCs. However, there are many circumstances in a > person's life that will raise cortisol and deplete glutathione, > which I believe are the biochemical factors that lead to the onset > of CFS in a person who has the appropriate genetic variations. > These circumstances can include physical, chemical, biological and > psychological/emotional stressors. The particular combination of > these circumstances is different for each case. Some probably don't > involve psychological/emotional stress. Others clearly do. But > it's the effects of these stressors on the biochemistry that is the > key. K: I see what you mean, and can see that this could happen...but being in the epidemic onset, and knowing many others in it, it just doesn't explain the onset, or all that follows. Other than these, I'm not sure it explains CFS-specific onset, either. But that gets to who, which def CFS do we mean? For instance, to develop your hypothesis, are you and the patients here identifying this exactly? It's kind of confusing, if not. ................................. > > Basically allopathic load, which is exactly what the CDC has just > announced. > > ***If you understand allopathic load to include all the factors I've > listed above, then yes, allopathic load, in combination with genetic predisposition, is one produces CFS onset for many PWCs. So long as you don't interpret allopathic load to be only caused by emotional > stress. I don't see it that way. > >K: No, I don't, but whenever that idea is attached to CFS, it does seem to be the case, as co-factor, and/or extender. {A side note is that I don't remember if you were here through all the endless discussions and comparisons on stress factors/stressors} .................................. The problem there is that they were not apparently studying the > population for which the name CFS was first invented (ME/CFIDS/CFS patients, most of whom became devastatingly ill overnight in a big epidemic, tho some were slower onset). And by and for whom this list was formed. > > Instead, were studying some mixture of fatigued, " CFS-Like " > persons (their words). > ] > R: ***The CFS case definition definitely has problems, as I discussed in my post to Cort. But it is true that the current case definition does include both epidemic and sporadic cases. K: Glad you said that...Because of this, I don't know how anyone is managing to actually select research subjects, with only " Fukuda def " (now wider than ever) and have it mean anything. It almost seems to be in the eye of the beholder, unless specified which subset (made up by the researcher, since the CDC has not made any!) But, I don't think impossible to do. ................................. There is no major ME/CFS Researcher that I have ever heard of who believes that CFS is inherited genes and allopathic/emotional load only. > >R: ***I don't know if there is or not. I certainly don't understand allopathic load as being due to emotional stress alone, and I don't think stress researchers in general see it that way. Certainly > Bruce McEwen and Goldstein, who coined this term and defined it originally, don't see it that way. Emotional stress is a contributor, K: But does seem neccessary to this R: but not the whole story. Allopathic load includes > everything to which the nonspecific stress response systems of the body respond. Tho I know you mean specifics, it still seems too random,too inevitable for my experience and witnessing of this disease ................................. > > Rich has also clearly said that his theories are not addressing sudden viral onset CFS. > > ***That's sort of what I said, but not exactly. I said that my > hypothesis does not address the epidemic cases. There are many sporadic cases that begin with a sudden viral-type onset, and my hypothesis does include those who undergo sudden reactivation of a latent endogenous virus, which seems to occur in about half the > cases that satisfy the Fukuda et al. criteria. K: Don't know about the 50% figure, but I do remember you said the above, and I should have also. ................................. but the wider (and ever widening) category now under the the > umbrella of " CFS " known as the " Fukuda " (CDC) definition. That his thoughts are " in progress " and that he is using the list as his laboratory. > R: *** " using " sounds a little indelicate. (:-) K: Yes, it does! sorry, I forgot the word you said R: I like to think that I am also " being used. " K Yes, 100% agree with that. R: Yes, I would say that my thinking is always > in progress. Haven't yet found all the ultimate truth about this disorder. K: You have said that...was just pointing it out, because that was not coming across from others' statements ................................. You have to understand that the gene/allopathic thing is > particulary a sore spot at the moment because: > > Millions of $$$ going into this theory is money not going into > other promising work and impressive findings in CFS. > R: ***I would like to see somewhat different research priorities, too. In particular, I would like to see certain additional parts of the genome explored for polymorphisms that are more frequent in PWCs, beside the neurotransmitter and stress response systems, though I do > agree that they are important. K: sounds great (with controls, I hope) ................................. And the CDCs answer to this for us is going to be CFS clinics > administering or even REQUIRING Cognitive Behavioral Therapy for PWCs. Exactly what is being done in the UK to ME/CFS men, women, and children. R:***I can't offer anything on that topic. I really don't know what they are planning to do. K: It's indicated several places, and having seen it evolve elsewhere and how, really colors how one views research and treatment interpretations ................................. This approach and dominance is also dismissing or minimising the contributions of the World's 2+ decades of ME/CFS Reseachers, patients, current work and treatmnts. (But some of which BTW, is very like Yasko's) > R: ***If you're referring to what I've been talking about here, I don't think that's true. What I've been doing is to study that whole body > of work, as self-contradictory as it is, and try to develop a > comprehensive hypothesis that incorporates it all, at least the actual observations, K Yes, I see that R: not necessarily the theories, many of which I don't believe are correct or are so limited that they really don't explain much. K: That can be your, or anyone's opinion...but some of us want to hear them through further, or with questions, before they are pronounced " incorrect " ...and contemplate/decide for ourselves. The same space that yours, A Yasko, or anyone's have gotten. They are looking at lab work, and actual bodies, some for 2 decades...what do they see? What are those patterns? Many of us do not know. Especially when actual patients are following their suggestions, so we can see the treatment effects...already in progress. ................................. They are now shot down on this list in 5 minutes, leaving mis- > characterizations of them, and the false impression that they aren't getting anywhere. Very unfair to both new and long-term patients. And guranteeing our ignorance and being out of the medical and ME/CFS loop and progress, btw. R: ***I certainly don't want to be unfair to anybody. K:YAY ! R: If you can get more specific here, I might be able to tell you if I agree or disagree with these contributions and why. I don't think it's unfair to do that. That's what scientific discourse is all about K: I'm so glad you asked. You recently said, as others have, that Dr. Cheney thinks the heart is the cause of CFS. But he does not say that. He'll be speaking in Sept w/video. Don't know what, if anything has changed, but I hear there's a bunch added!. Other things get said here about various others, I think also Someone just pronounced that we discussed Ciguatera epitope, and it did not pan out... A) It's alive and kicking, at U of H, with a mill or so from the NIH Something about identifying lipids involved, how to fix them, and if/what pathogen is causing it. The " discussion " was under very hostile circumstances here (I don't think that included you) ................................. Including Cardiac, Neurological, Immune, and more. ANd includes > gene expression, which some find extremely exciting, for CFS and all diseases. > R: ***O.K. Well, I think the glutathione depletion--methylation cycle block hypothesis encompasses the aspects of CFS from all those fields. I think they are all significant aspects. Perhaps the > differences between my hypothesis and the ideas of others are in the > realm of what causes what. I'm trying to put together a cause- > effect tree that jibes with accepted biochemistry and physiology and > also corresponds to the observed course of the illness. K: Not an either or...maybe people want to know your hypothesis, and X, Y, Zs, too... ................................. (Personally, I think the field of Neurogenesis is very exciting, > and appopos, due to amyloid protein findings, brain,neuron and > muscle damage in CFS). > R: ***Well, I'd like to hear more about that. K: Kewl I'll review Whatever happened to the CDC's finding that the Huntington's > protein is over expressed in CFS?? > >R: ***I don't know whether this observation has been replicated in the gene expression work that has come later or not. I think there was a misconception about this observation. It had nothing to do with implying that there was any connection between CFS and Huntington's disease. It was just that they found a difference in gene expression in the gene that is found to be abnormal in Huntington's > disease. But the gene itself was not found to be abnormal in PWCs. K: Right...just want know more...why, where did it go, Why did we hear it " accidentally " , etc ? ................................. > > Another giant leap of the dominent theme here is that this/Yasko is " the answer " , " the cure " . (And that you're a dufuus if you don't believe it lol) Tho this has been said about MANY, MANY theories over the years, this has been one of the most manic,least challenged and hardest sells I have ever seen here. > R: ***Well, for what it's worth, I don't feel that way. Do I seem manic to you? I'll go with obsessed, but manic is a little strong, > I think. K: agree, about you,,,but general speediness and content of posts and toward others.....100 messages a day for several weeks, twice that of before ................................. With the heterogeneous population that we have in CFS under the current definition, I don't believe that one approach will help everyone. I do think that this one will help quite a few, though, and I'm excited about it for that reason. K: Nothing wrong with that...just was not coming out clearly R: I'm really not trying to sell anything, but I am hoping to interest people in > thinking this approach over seriously. I actually appreciate challenges, because that's how we test hypotheses. K: THat makes alot of sense ................................. And this, UNLIKE all of the others, with ZERO evidence, ZERO persons here cured, or even in remission from doing it! R: ***I'm not sure it's unlike all the others in that regard. Most treatments for CFS have helped some with the quality of life, but cures have been few and far between. K: Some others do have remissions and alot of improvement to go along with the enthusiasm and space discussing them R: As far as evidence, I think there's actually quite a lot. I don't know whether you have been reading the case analyses I've been posting, but the pieces of evidence really do fit together quite well on many of them, I think. K: I meant changes from members doing all the discussin', as with other things discussed R: I think we are going to have to be patient a little longer to see the results in a number of people, because it takes time to shift the metabolism, which has been going in wrong directions for decades in some cases, back to the right directions. K: Of Course! Same that should be given to others, for same reasons! There is a lot of epigenetics that has to be changed. In addition, during part of this frenzy, it has been implied, nearly directly stated, (I don't mean by Rich) , that if one does not jump on-board, they do not want to get well!! R: ***Well, I certainly don't feel that way. I realize that different people are going to need differing amounts of evidence before they > will be prepared to make a decision about this. I know that there have been a lot of disappointments and a lot of money spent on things that didn't help. I don't blame people at all for being > skeptical and asking hard questions. I do the same to myself, even in my sleep! K: Super....I sure hope others will consider what you have said, which will require a shift...on and off-list ................................. That is one of the oldest, and meanest things that have been said to PWCs for the last 2 decades, regarding any number of theories, that are the speaking person's current (usually very expensive) passion. R: ***I think that sometimes people are really trying to convince themselves when they imply things like that to others. It's not easy to step out on a limb, and once you've done it, it's hard to listen to people questioning you about what you've done, while you're still waiting to see results yourself. It's a stressful place to be. K: Yes, have 1st hand and eyewitness experience, right here in River City...many have been there...here. ................................ All of this is a far cry from what you cited as there being > overlaps with Autism, or that CFS is believed to be a brain disease. > (Which it is, by many). R: ***Well, I believe that there are major overlaps with autism, and there's no question that the brain is affected in CFS, though differently than it is in autism, by reason of the different ages at onset and the different status of brain development at those ages. I think the questions are about what causes the problems in the brain, and where does the disease process actually start? K: Keep us posted! ................................. > > We would therefore have an overlap with many brain diseases, and > since we have a multi-system disease, an overlap with many diseases. > That is very different from being the " same disease " , which has been > stated by many, many others, over the years. (Candida/Yeast, CEBV, MCS, FM, Amalgams,Lyme, Psych/stress/Immune, Mold, EMFs,etc.) R: ***I believe that the genetic predisposition and much of the > biochemistry are substantially the same in CFS and autism. There certainly are differences in the effects on the brain in the two, and again, I think that results from the different ages at onset. K: What about the rest of the bod? All the other systems in each? How, the same? I only see elements...so far ................................. At least in those cases, there were people actually cured or in remission by treating those things. And teach us a great deal about each that can help us. R:***If you're speaking of the list above, starting with > Candida/Yeast, yes, some helpful treatments have been found for some of them. However, where these things have been comorbid with CFS, I > think the root cause has often not been dealt with, so that the person is not really well, though the quality of life has certainly been improved by working on these things. K: It was just more (tangible)to go on, for full fledged experiment sign-ons. and pressing others.. Also, some of you on the list have been referring to Rich as God, Doctor, Geneticist, Pathologist, none of which he is, or has claimed > to be.( um, I don't think) > R: ***You got that last part right! That would be quite a responsibility { I didn't much like the theme either that the most articulate and least cognitively impaired are the geniouses, and the rest are the dummies. Some of the slowest processing, most cognitively impaired (or with least $$ resources) here have some of the best knowledge > of CFS discoveries, and for TREATING this disease) > R: ***Yes, they are veterans of a lot of prior battles, and I value their corporate memory and experience. K: Thank you for sharing your view of this There is nothing wrong with what Rich is studying or Yasko is doing, and it seems to be very valuable work. > R: ***I'm sure there are some errors in it, and a lot that hasn't been discovered yet, but I'm hopeful that we are on the right track. K Will be very interestin ................................. Maybe for some, with genes/allopathic load, it will actually be curative. ANd for *anyone*, it would be valuable to find what food, supplements, and medications are healing or blocking to healing and why. > > ***As I say, I'm hopeful that it will be helpful to many. > > > My neighbor, who is an Acupuncturest, offered a few months ago to do similar testing for me at his special rates. Rich has been great at taking the time to expand upon and explain these pathways, although my CFIDS brain can't possibly get it quickly. > R: ***There's a lot that comes in one side and goes out the other side of mine, too. lol, whew But yes, great leaps of faith and totally closed doors to other theories ARE required to sign on to this one, *as presented*. Plus > everything else that comes on the list seems to now require > filtering/approval through this view it seems. > R: ***Well, I don't see it that way myself. There are quite a few things that are raised that I don't comment on, because I don't think I understand them enough to make an intelligent contribution. It's true that I am trying to incorporate all genuine observations in CFS into a comprehensive hypothesis that can account for all of > them, though. I'm sorry if that looks like filtering. I would call it incorporating. K: hmm, have to think about that ................................. The Moderators post was no different for Yasko than any other theory here. ANd has been generously done by many other (much more depleted) patients who were working on something...presenting the > theory and their specific results in a straight forward > manner...sans the hard sell, personal pressure, for instance. R: ***I think we do need to be gentle with each other. K: I know it can be done ................................ Once again, listmembers with other needs and views are going > backchannel and underground to seek or share their information, which is be very tedious and draining, and limits the lists' > exposure to it. R: ***I hope everyone will continue to feel that their views are welcome. K: That, coming from you, will make a big difference ................................. Someone who posted here, seeking help for a very severe patient > was met with.... " sounds grim, only prayer will help. " > R: ***I don't recall that particular response, but I can tell you that I pray for a lot of people. I still support the philosophy of " Praise the Lord and pass the ammunition, " though. I think we have to try to figure things out and do what we can, but I don't plan to stop praying in addition. K: AGREE {I think the person was hoping for some ammunition, too} ................................. A brand new person was told only that listmembers are doing a > program that they/we think will cure us. Maybe that was OK, but why > should they listen to anything else, then, that might help them > *today*? > R: ***Well, I think we have to depend on each person to decide what they feel like listening to, and I agree that we need to make different ideas and views welcome here K: All of that together sounds strengthening for all > > ... THere are multiple other forums for Yasko, Autism, and other angles. This is the largest, and *the only* one for most for treatment only of ME/CFIDS/CFS, involving > many many theories and many treatments. > > R: ***Right on. I think that's a real strength of this group. The free marketplace of ideas, and all that. K: Yippeee, the best of all worlds, the thing that's meant so much here to so many... THANK YOU so much, Rich, for sharing your views, which are much clearer. I think that's very valuable and hope others do too. TC, Katrina ***Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 > Other giant leaps of the dominant theme of the last weeks/months on : That Chronic Fatigue Syndrome is caused by inherited genes, stress and emotions. That is a *very debatable* premise. It has been discussed and rejected many times > here and ME/CFS world. > > ***Hang on a minute, there, Katrina. If you're referring to what > I've been talking about, that isn't exactly what I've been saying. Yes, I believe that inherited genetic variations are at the root of CFS for many PWCs. However, there are many circumstances in a person's life that will raise cortisol and deplete glutathione, which I believe are the biochemical factors that lead to the onset of CFS in a person who has the appropriate genetic variations. These circumstances can include physical, chemical, biological and psychological/emotional stressors. The particular combination of these circumstances is different for each case. Some probably don't involve psychological/emotional stress. Others clearly do. But it's the effects of these stressors on the biochemistry that is the key. > No, there was nothing you could call " stressors " any more than you could say that getting shot or stabbed is " stressing " the body by lack of blood " : Like the ridiculousness of saying " It wasn't the bullet that killed him, it was stress of getting shot " (stress meaning trauma and blood loss) I remember in the old days when stress meant psychologial, and if you got a horrible illness or physical trauma - these weren't included. What is the problem here with dropping the " stress " BS. We got a flu-like illness from Hell. It didn't care who it hit. It raged through clusters of people in a spectacular manner that defies statistical requirements for a rare inherited illness, yet twenty years after we dropped all this CRAP in Incline - people on a CFS list debate it as if these things were relevant. They are not. Unless you are discussing some illness that is so unlike CFS that you have to say " CFS is heterogeneous " to cover your ass. CFS is NOT heterogeneous. The reason it was turned into a syndrome is that we all shared the SAME signs and symptoms. CFS was the OPPOSITE of heterogeneous. Amazing how people forcefully say that " heterogeneous " if it were obvious and unquestioned. They need to in order to promulgate and " anything and everything " concept. But take another look. The entire reason for the creation of " CFS " is because we all had the same signs and symptoms after that " Yuppie Flu " passed through. It it had been heterogeneous, the connection between our illness wouldn't even have been made. If the CFS one is speaking of is so unlike CFS that it doesn't share the same symptoms, it's not part of the syndrome, and it is not CFS. Autism is just plain not like CFS. (and that's what I really think) - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Yes I know about Dr. Goldstein - I tried to read one of his books but failed unfortunately. I agree that the brain is key in CFS. My newsletter - Phoenix Rising - is full of studies on brain problems in CFS. I have written three papers reviewing the possible connection of hte brain in CFS. My disagreement that Autistics and CFS patients suffer from the same general problem - but at differnet times in their development, does not indicate that I dont think the brain is involved - I think its an intimate part of CFS. You can find the brain papers as well as others at http://www.phoenix-cfs.org/The%20SITE/CFSResearchIntro.htm Edy Rayfield <edyrayfield@...> wrote: Hi Cort, If you've never read or heard of Dr. Jay Goldstein check him out. He's retired now , but wrote a book about CFS call " Betrayal by the Brain " He didn't link it with autism, but he did think that the brain was the central issue of the problem. He also wrote " Chronic Fatitigue Syndrome: the limbic hypothosis " They're very technical, but he was a brilliant researcher and was pretty much poo pooed in the CFS community for a while. It's drug oriented approach, but that was many years ago. tansyap <tansyap@...> wrote: Hi Cort I don't think anyone is asking for a huge leap in faith, nor to see autism, ME, and CFS as the same illness. I am sure you are aware of Professor Malcolm Hooper in the UK. He recognises both the overlaps, and distinctive specific features, in autism, GWS, OPP, MCS, ME, and CFS. A brief overview of some of his work can be seen at http://www.ahummingbirdsguide.com/whooper.htm Professor Hooper and his colleagues have probably done more than anyone else in the UK to get ME recognised as a distinctive physical illness; but he also writes and talks about shared features present in other chronic illnesses. He recognises the roles of toxins and infections. As I see it Dr Yasko and Rich are not saying autism and ME (CFS) are the same illness; instead they are exploring shared inherited factors that can lead to the development of neurological illnesses. The posts here are also making sense of different reactions to glutathione, my RBC glutathione levels were low, but using the methods usually recommended to raise glutathione levels, backfired on me. I am beginning to comprehend why. I think understanding weaknesses and blocks in various pathways has the potential to provide a valuable adjunct to other protocols, and in some cases could work as a stand alone. TC, Tansy -- In , cort johnson <cortttt@...> wrote: > > I just think it takes a huge leap of faith to believe that autism - one of the most profoundly disturbing brain diseases - and CFS are similar in pathology. Rich got interested in autism by learning that glutathione can be helpful in autism. But does this mean the two have similar causes? That GSH is depleted in both? Or is it more likely at this point thiat they share another common factor such as increased oxidative stress? > > We know that glutathione is very helpful in some CFS patients, moderately helpful in others and not helpful in others. The research evidence for low glutathione levels in CFS is very mixed with most studies showing normal glutathione levels. This is not to say GSH cannot be very helpful in CFS; CFS has consistently been shown to be a disease of high oxidative stress and GSH is the main detoxifier in the body - it stands to reason that it would be helpful. I wouldn't be surprised if GSH supplementation helps to some degree in many chronic diseases. Whether or not it is central in CFS is an entirely different proposal. > > To be blunt about it a good number of studies have looked at antioxidants levels (GSH included) and there doesn't seem to be a rush in the research community to study it. - we are the ones that are most interested in it. Even Dr. Cheney - who brought whey protein to the fore in CFS - did not list it among his top 4 treatments. I know there are people who have gotten a great deal of help from glutathione - I dont want to dissuade anybody from trying this excellent compound - but I dont see the evidence that indicates it is central to CFS . > > While it is true that autistic people share some symptoms with CFS patients so do fibromyalgia syndrome patients, irritable bowel syndrome patients, myofascial pain syndrome and people with overtraining syndorme. The symptomatic overlap between overlap between orthostatic intolerance and CFS is simply amazing. Besides their movement difficulties MS patients can experience overwhelming fatigue. CFS patients also share numerous symptoms with what is called 'sickness behavior' - which refers to the acute stages of infection we are all familiar with. Most of the symptoms in CFS are fairly and a fair number of diseases have many of them. It would be interesting to see in post exertional fatigue is present in autism - it appears to be in FMS. > > I dont know alot about methylation - I'm waiting for Rich to write a paper on it - but I would not go so far to say that every CFS patient has problems with methylation. I would suggest that some do and treatments based on those problems will be helpful in that case. > > I think the methylation treatments will be like many treatment protocols; each one helps some people in a moderate degree, a few people will luck out and get really well and some wont get much of a response to it at all. Why do I think t hat? Because there is little evidence as yet that CFS is truly a hereditary disorder - the twin studies certainly dont show that. Does this mean heredity doesnt play a role? No, hereditary does play some role and it will good to know what role it plays but it is not determinative. Just on personal level - my twin brother does not have CFS. Somewhere along the line I bumped into something really bad and he didnt - that I think is the difference between us two. > > I think theres a long long way to go on our journey to understand CFS. I dont think its going to be this easy. I do think that detoxification is very important, however, and if methylation fits into this detoxification scenario, then treatments addressing it, along with GSH, will be another valuable addition to the CFS treatment regime. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 :I would disagree with that first statement - Rich explicitly says that he thinks CFS and autism have the same pathology - the difference in their symptoms is simply t he result of when the pathology. That's a very strong statement - one that really gets me out of my chair! I think your comment is a good one - t hat Yasko is studying inherited factors can lead to neurological illnesses - that fits for me. tansyap <tansyap@...> wrote: Hi Cort I don't think anyone is asking for a huge leap in faith, nor to see autism, ME, and CFS as the same illness. I am sure you are aware of Professor Malcolm Hooper in the UK. He recognises both the overlaps, and distinctive specific features, in autism, GWS, OPP, MCS, ME, and CFS. A brief overview of some of his work can be seen at http://www.ahummingbirdsguide.com/whooper.htm Professor Hooper and his colleagues have probably done more than anyone else in the UK to get ME recognised as a distinctive physical illness; but he also writes and talks about shared features present in other chronic illnesses. He recognises the roles of toxins and infections. As I see it Dr Yasko and Rich are not saying autism and ME (CFS) are the same illness; instead they are exploring shared inherited factors that can lead to the development of neurological illnesses. The posts here are also making sense of different reactions to glutathione, my RBC glutathione levels were low, but using the methods usually recommended to raise glutathione levels, backfired on me. I am beginning to comprehend why. I think understanding weaknesses and blocks in various pathways has the potential to provide a valuable adjunct to other protocols, and in some cases could work as a stand alone. TC, Tansy -- In , cort johnson <cortttt@...> wrote: > > I just think it takes a huge leap of faith to believe that autism - one of the most profoundly disturbing brain diseases - and CFS are similar in pathology. Rich got interested in autism by learning that glutathione can be helpful in autism. But does this mean the two have similar causes? That GSH is depleted in both? Or is it more likely at this point thiat they share another common factor such as increased oxidative stress? > > We know that glutathione is very helpful in some CFS patients, moderately helpful in others and not helpful in others. The research evidence for low glutathione levels in CFS is very mixed with most studies showing normal glutathione levels. This is not to say GSH cannot be very helpful in CFS; CFS has consistently been shown to be a disease of high oxidative stress and GSH is the main detoxifier in the body - it stands to reason that it would be helpful. I wouldn't be surprised if GSH supplementation helps to some degree in many chronic diseases. Whether or not it is central in CFS is an entirely different proposal. > > To be blunt about it a good number of studies have looked at antioxidants levels (GSH included) and there doesn't seem to be a rush in the research community to study it. - we are the ones that are most interested in it. Even Dr. Cheney - who brought whey protein to the fore in CFS - did not list it among his top 4 treatments. I know there are people who have gotten a great deal of help from glutathione - I dont want to dissuade anybody from trying this excellent compound - but I dont see the evidence that indicates it is central to CFS . > > While it is true that autistic people share some symptoms with CFS patients so do fibromyalgia syndrome patients, irritable bowel syndrome patients, myofascial pain syndrome and people with overtraining syndorme. The symptomatic overlap between overlap between orthostatic intolerance and CFS is simply amazing. Besides their movement difficulties MS patients can experience overwhelming fatigue. CFS patients also share numerous symptoms with what is called 'sickness behavior' - which refers to the acute stages of infection we are all familiar with. Most of the symptoms in CFS are fairly and a fair number of diseases have many of them. It would be interesting to see in post exertional fatigue is present in autism - it appears to be in FMS. > > I dont know alot about methylation - I'm waiting for Rich to write a paper on it - but I would not go so far to say that every CFS patient has problems with methylation. I would suggest that some do and treatments based on those problems will be helpful in that case. > > I think the methylation treatments will be like many treatment protocols; each one helps some people in a moderate degree, a few people will luck out and get really well and some wont get much of a response to it at all. Why do I think t hat? Because there is little evidence as yet that CFS is truly a hereditary disorder - the twin studies certainly dont show that. Does this mean heredity doesnt play a role? No, hereditary does play some role and it will good to know what role it plays but it is not determinative. Just on personal level - my twin brother does not have CFS. Somewhere along the line I bumped into something really bad and he didnt - that I think is the difference between us two. > > I think theres a long long way to go on our journey to understand CFS. I dont think its going to be this easy. I do think that detoxification is very important, however, and if methylation fits into this detoxification scenario, then treatments addressing it, along with GSH, will be another valuable addition to the CFS treatment regime. > > > > --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Hi, . One problem I've never had with you is not knowing what you really think about this issue! (:-) I don't know if there would be any benefit in going over all this again at great length, since we've done that more than once over the past few years. I guess I'll just try to make some fairly succinct comments for the benefit of those who have joined us more recently: 1. The word " stress " does mean different things to the average person on the street from what it means to those who do research in the field of stress. That's kind of unfortunate, because it leads to misunderstanding. Maybe that's why the researchers seem to like the term " allopathic load " now. It really means pretty much the same as what Hans Selye meant when he defined the term " stress " and started the field of stress research quite a few years ago. And, to the researchers, both terms encompass a great deal more than emotional or psychological stress. Basically they include anything that places demands on the organism, and to which the nonspecific stress response systems (which produce cortisol, epinephrine, and norepinephrine) respond. 2. Concerning the epidemic cases of what has come to be called CFS, but might better be called ME, I am well aware that there are differences between them and the sporadic cases. I think both are very worthy of research, since both impact the health of a lot of people deleteriously. 3. I had nothing to do with the development of the current research case definition (Fukuda et al. definition) for CFS. I know you don't like it, and I think it has a lot of problems, too. I would prefer several tighter definitions for the various subsets. I'm not sure we know enough to write them yet, though. 4. The majority of the cases that currently meet the Fukuda et al. criteria are sporadic cases. Most of the people on this list have sporadic cases. I have been working to try to understand these cases, and I do think that their pathogenesis has a great deal in common with most of the cases of autism. If you want to see what I mean about the genetic similarity, join the www.autismanswer.com parents group, and just check at the bottom of a few posts there. Each post at the bottom gives the results of the Yasko panel for the autistic child of the parent writing that particular post. Then take a look at the Yasko panel results for the several PWCs who have posted them here on this list or on the parents and adults section of the autism answer list. They really are similar. Of course, they vary from person to person, which makes for subsets, but they are by and large the same subsets. And you can find the combinations of SNPs found in either autism or CFS discussed in individual sections of Dr. Yasko's book " Genetic ByPass. " 5. As I've said in the past, I think that the cause of the epidemic cases of what is now called CFS, but probably should be called ME, was either a very virulent virus or a virulent mold. Perhaps it was a combination of the two. You have certainly convinced me of the mold involvement in your case. 6. As I've said in the past, , I'm sorry that your disorder was " hijacked " by the CDC-sponsored committee and combined with other subsets under the grand title of CFS, but that is an historical fact, and what is, is. My guess is that you can remonstrate about it until the cows come home, but there is not likely to be much change until the various subsets are well enough defined that tighter case definitions can be written. It might just ironically turn out that my effort to better understand the sporadic cases might assist in some small way in separating them out from the epidemic ones. If we all live long enough to see that happen, maybe you will actually decide that I did something to help your cause after all! (:-) Rich > No, there was nothing you could call " stressors " any more than you > could say that getting shot or stabbed is " stressing " the body by > lack of blood " : Like the ridiculousness of saying " It wasn't the > bullet that killed him, it was stress of getting shot " (stress > meaning trauma and blood loss) > I remember in the old days when stress meant psychologial, and if > you got a horrible illness or physical trauma - these weren't > included. > What is the problem here with dropping the " stress " BS. > We got a flu-like illness from Hell. It didn't care who it hit. It > raged through clusters of people in a spectacular manner that defies > statistical requirements for a rare inherited illness, yet twenty > years after we dropped all this CRAP in Incline - people on a CFS > list debate it as if these things were relevant. > They are not. Unless you are discussing some illness that is so > unlike CFS that you have to say " CFS is heterogeneous " to cover your > ass. > CFS is NOT heterogeneous. The reason it was turned into a syndrome > is that we all shared the SAME signs and symptoms. > CFS was the OPPOSITE of heterogeneous. > Amazing how people forcefully say that " heterogeneous " if it were > obvious and unquestioned. They need to in order to promulgate > and " anything and everything " concept. > But take another look. > The entire reason for the creation of " CFS " is because we all had > the same signs and symptoms after that " Yuppie Flu " passed through. > It it had been heterogeneous, the connection between our illness > wouldn't even have been made. > If the CFS one is speaking of is so unlike CFS that it doesn't > share the same symptoms, it's not part of the syndrome, and it is > not CFS. > Autism is just plain not like CFS. > (and that's what I really think) > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Rich, I'm new here and puzzled. Why are you differentiating between epidemic and sporadic? (Are you really diifferentiating between acute and gradual onset?) Are you saying that the sporadic cases remain ill due to the vicious cycle of glutatione depletion & methylation problems, but that the epidemic cases do not? Why would a bad virus or mold not be sufficient to induce this cycle? I thought we were always talking about M.E. here - that CFS was just a term taken from a bad defintion (or more likely, the intentional avoidance of a definition). If you're not talking about M.E., what are you talking about? Just saying Fukuda is not enough to enlighten me. It's vague to the point of meaninglessness. I respect your work, except I'm less sure that I understand what you are addressing. - Bob Niederman On 8/16/06, rvankonynen <richvank@...> wrote: > Hi, . > > 2. Concerning the epidemic cases of what has come to be called CFS, > but might better be called ME, I am well aware that there are > differences between them and the sporadic cases. I think both are > very worthy of research, since both impact the health of a lot of > people deleteriously. > 5. As I've said in the past, I think that the cause of the epidemic > cases of what is now called CFS, but probably should be called ME, > was either a very virulent virus or a virulent mold. Perhaps it was > a combination of the two. You have certainly convinced me of the > mold involvement in your case. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Hi, Bob. I'm sorry for the confusion. I'll try to be a little clearer. M.E. (myalgic encephalomyelitis) was characterized by Dr. A. Melvin Ramsay in England in a book published in 1986 entitled " Postviral Syndrome, the Saga of Royal Free Disease, " in response to an outbreak of illness at the Royal Free Hospital in 1955. This was an epidemic situation, in the sense that it occurred in a limited geographical area over a limited period of time. Dr. Ramsay described the symptoms in detail in his book, and also listed three distinguishing characteristics, which in brief were muscle fatigability, susceptibility to cold and climate change, and cerebral involvement, including impairment of memory and inability to concentrate. Dr. Ramsay also reviewed several other outbreaks of M.E. that had occurred prior to the one at the Royal Free Hospital. There are also descriptions of the various outbreaks in the book edited by Byron Hyde entitled " The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, " which was published in 1992. CFS (Chronic Fatigue Syndrome) was first defined by a committee at the U.S. Centers for Disease Control in 1988, and this case definition was modified and republished in 1994 in a paper by Fukuda et al. This definition was developed after several outbreaks (clusters, epidemics) in the U.S. in the 1980s, including probably the most famous one, in Incline Village, NV. The definitions that were developed did not limit CFS to epidemic outbreaks, however. The CDC committee was operating to a large degree from their personal recollections of patients from the past who seemed to have similar symptoms to those reported in the epidemics. These definitions thus included people with sporadic cases, that is cases that did not arise in clusters grouped in geography and time, but instead at random times and locations. So the current research case definition includes both epidemic and sporadic cases that exhibit the set of symptoms described. This is what on this list objects to so strenuously and so consistently. He was part of the epidemic outbreak in Incline Village. He does not appreciate the fact that the CDC committees lumped his case and those of others in the clusters to the sporadic cases, since there were big differences in the type of onset and he believes also in the severity of the symptoms. The onset in the epidemic cases was sudden and severe. In the sporadic cases that meet the criteria of Fukuda et al., about half have a sudden onset that seems to be viral in its characteristics (flu-like), and about half have gradual onset. Some seem to have sort of a combination, in which the illness seems to come and go mildly for a while, and then they get hit hard at a certain point in time. There is also a wide range in symptom severity. emphasizes the severity of the symptoms in the epidemic outbreaks. Some of the sporadic cases also have very severe symptoms, while some are less severe. In developing hypotheses for CFS, I have focused on the majority of cases that are described in the research literature and by individuals from whom I have heard personally or who have reported the characteristics of their illness on internet lists. The majority of the existing cases today that fit the Fukuda definition are sporadic cases. They are the ones that I believe my hypothesis fits best, because they are the ones it is based upon. It is possible that my hypothesis will also fit some or all of the epidemic cases. I haven't had enough data to determine that. It does seem that the onset was much more severe in the epidemic cases, and I suspect that a very virulent virus or mold or both were involved. It is possible that the resulting infection did plunge these people into a similar vicious circle mechanism involving glutathione depletion and methylation cycle block, but I don't have enough data to determine that. One issue that raises, which I think is a valid one, is that if a set of genetic polymorphisms that only a small fraction of the population has are necessary to predispose a person to developing CFS, then how do I explain the fact that nearly everyone who is exposed to others in the epidemic outbreaks developed this disorder? I don't have a good answer to that, and that's why I say that so far I don't think this hypothesis applies to the epidemic cases, at least not the genetic predisposition part. In 's own case, there is a major component of mold susceptibility, and that is also something that is not in my model. I hope this clears things up a little. Rich > > Hi, . > > > > > 2. Concerning the epidemic cases of what has come to be called CFS, > > but might better be called ME, I am well aware that there are > > differences between them and the sporadic cases. I think both are > > very worthy of research, since both impact the health of a lot of > > people deleteriously. > > > 5. As I've said in the past, I think that the cause of the epidemic > > cases of what is now called CFS, but probably should be called ME, > > was either a very virulent virus or a virulent mold. Perhaps it was > > a combination of the two. You have certainly convinced me of the > > mold involvement in your case. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 " rvankonynen " <richvank@...> wrote: > > Hi, . > > 5. As I've said in the past, I think that the cause of the epidemic cases of what is now called CFS, but probably should be called ME, was either a very virulent virus or a virulent mold. Perhaps it was a combination of the two. You have certainly convinced me of the mold involvement in your case. > Rich, I believe that if you had said this in the past, we wouldn't have had these years of disagreements. You were a tough nut to crack on the mold issue, considering that your friend Rick told you about it eight years ago, and I confirmed to you and Pall that Stachy was indeed involved in the Incline Village cohort - and was a clue worthy of investigation. It was disappointing that you guys rejected firsthand information and dismissed my experience until Dr Shoemaker wrote it in Mold Warriors. This is another confirmation of the difficulty we've had in communicating our situation to others. We say exactly what happened, and doctors/researchers simply go on with whatever they were thinking - regardless of the facts. This has caused me to refine my views of the methodologies of researchers considerably. I cannot assume that someone is referring to my illness when they say " CFS " or " CFS subsets " and must rely on telltale indicators contained in their descriptions. For example, the " heterogeneous " concept. Doctors who throw " anything and everything " into the CFS wastebasket are very fond of this idea, but it doesn't quite fit the facts. The reason for Dr to call the CDC is that despite " sporadic " cases, clusters of identical signs and symptoms were occurring in clusters - specifically in Truckee High school. A sign of an epidemic! This illness was distinguished by definite concurrent features, which Dr Cheney and Dr described loosely in the media so people could recognize the disease - but which had very notable characteristics which set it apart from known illnesses. As Dr said " We had never seen anything like this before " . That is a pretty far cry from an illness of general allopathic load or stress which commonly results in a " CFSlike " illness. The inclusion of these " other CFS's " which are so unlike ours that the theorist is forced to say " CFS has moved on since Incline Village " and " You don't represent CFS anymore " is a positive indication that even though people are saying " CFS " , they certainly do NOT have my illness in mind, and apparently have no more desire to determine the cause of " CFS " in its original form than the CDC does. Naturally, being an Incline Survivor and CFS prototype, it can be assumed that when I speak of CFS, I do so in the same way Dr does - meaning " Original " or Canadian Guidelines ME/CFS. If someone with an overly broad concept of CFS is called upon to specify which " CFS " they are referring to, and they decline to make any distinction upon this point, I can rest assured that the reason for this reluctance arises from their own recognition that the CFS of which they speak is nothing like ours. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 " rvankonynen " <richvank@...> wrote: > So the current research case definition includes both epidemic and sporadic cases that exhibit the set of symptoms described. This is what on this list objects to so strenuously and so consistently. He was part of the epidemic outbreak in Incline Village. He does not appreciate the fact that the CDC committees lumped his case and those of others in the clusters to the sporadic cases, since there were big differences in the type of onset and he believes also in the severity of the symptoms. > The onset in the epidemic cases was sudden and severe. In the sporadic cases that meet the criteria of Fukuda et al., about half have a sudden onset that seems to be viral in its characteristics (flu-like), and about half have gradual onset. Some seem to have sort of a combination, in which the illness seems to come and go mildly for a while, and then they get hit hard at a certain point in time. > > There is also a wide range in symptom severity. emphasizes the severity of the symptoms in the epidemic outbreaks. Some of the sporadic cases also have very severe symptoms, while some are less > severe. Rich, No, that is not my objection. Two of the Truckee teacher cluster - husband and wife, Gerald and Janice Kennedy had different onsets. Janice was sudden and Gerald developed over several months - but they both wound up with the same illness. The reason I raise the point of symptom severity is to distinguish the illness from anything that could possibly happen from stress, burnout, or some kind of " allopathic load " . I have pointed out that the Lyndonville children represent themselves as being recovered, despite Dr Bell's measurements of functional capacity which indicates that they don't even realized that are subnormal. They never learned what " normal " is supposed to be like, and even though they have improved from the initial phase, I have always recognized that this illness has a wide range. But I use the extreme examples to show that researchers should consider mild cases to be a variant of something that is absolutely life destroying, rather than viewing extreme cases as mere flukes that they try to cram into their ridiculous notions that this is entire epidemic is just " burnout - plus maybe a virus and a bit of dysfunctional behavior " This illness raged through a community and didn't gave a damn about anyones stress or lack thereof. Dr Cheney chose me to be a CFS prototype, BECAUSE I HAD THE FEWEST PATHOGENS!!!! That is the complete and total opposite of allopathic load. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 On Aug 17, 2006, at 10:59 AM, erikmoldwarrior wrote: > " rvankonynen " <richvank@...> wrote: >> > So the current research case definition includes both epidemic and > sporadic cases that exhibit the set of symptoms described. This is > what on this list objects to so strenuously and so > consistently. He was part of the epidemic outbreak in Incline > Village. He does not appreciate the fact that the CDC committees > lumped his case and those of others in the clusters to the sporadic > cases, since there were big differences in the type of onset and he > believes also in the severity of the symptoms. >> > The onset in the epidemic cases was sudden and severe. In the > sporadic cases that meet the criteria of Fukuda et al., about half > have a sudden onset that seems to be viral in its characteristics > (flu-like), and about half have gradual onset. Some seem to have > sort of a combination, in which the illness seems to come and go > mildly for a while, and then they get hit hard at a certain point in > time. I'm likely one of the epidemic cases, and I'm somewhere in between here. I first had EBV or CMV or something in a dorm at UCLA in 1977, and then it mostly went away -- " coming and going mildly, " as you put it. Seven years later, in the fateful winter of '84-'85, I was living in the Bay Area (Santa Clara) and traveling up to Tahoe every month or six weeks for work. (I was covering the U.S. women's ski team for a national sports magazine, and they were training up there.) The illness started coming on that fall, and accelerated over the winter and spring. By the summer of '85, I was deep in it. I'd already had a physically and emotionally exhausting 1984, and I still believe the stress of that year at least helped set me up for the fall. I didn't have many resources left to cope. Two of the Truckee teacher cluster - husband and wife, Gerald and > Janice Kennedy had different onsets. Janice was sudden and Gerald > developed over several months - but they both wound up with the same > illness. This, to me, makes a lot of sense in the context of the genetic thesis. Janice may have had some SNPs that made her much more vulnerable to the bug, and thus fell very quickly into the CFS symptom cascade. Gerald may have had fewer SNPs, and hence more resistance -- it took longer for him to fall apart. > The reason I raise the point of symptom severity is to distinguish > the illness from anything that could possibly happen from stress, > burnout, or some kind of " allopathic load " . Why is it so hard to credit the idea that people whose bodies aren't under biochemical stress -- who are relatively healthy, happy, eating well, and so on -- are more resistant to breaking down under the neuroimmune onslaught of CFS? At the very least, it may hit them more slowly. This is true of every other disease under the sun; it's why people try to eat well, get enough exercise, and generally stay healthy. I'm not arguing that general good health is the only factor; but that it probably plays some kind of role that shouldn't be discounted entirely. > But I use the extreme examples to show > that researchers should consider mild cases to be a variant of > something that is absolutely life destroying, rather than viewing > extreme cases as mere flukes that they try to cram into their > ridiculous notions that this is entire epidemic is just " burnout - > plus maybe a virus and a bit of dysfunctional behavior " > This illness raged through a community and didn't gave a damn about > anyones stress or lack thereof. > Dr Cheney chose me to be a CFS prototype, BECAUSE I HAD THE FEWEST > PATHOGENS!!!! > That is the complete and total opposite of allopathic load. I think it's a much wider combination of factors, not either-or. Even a very healthy person -- like you (hell, like me until 1977) -- can have a genetic predisposition that gives the disease a major leg up. And even those who are genetically in pretty good shape can be more easily compromised if their allostatic load is high. It's a whole lot more subtle than that, and dependent on lots of variables. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Hi Sara, I think that some of what you are saying here is completely different from the theories recently presented. As Cort said genes may be A FACTOR in any disease...they may be " a factor " in the course of HIV, for instance. BUt there still is an " IT " , or combination that causes AIDS. That causes a disease completely unlike any other, with damages unlike any other, that have to be addressed and treated for one to live and breathe. An " IT " , that when in the blood supply, known and and hidden by the CDC, caused multitudes of people to become sick and die. An IT, that if not addressed, with specific knowledge of the IT and the damage and disease process unique to IT, still kills millions. The current theories are saying Autism and CFS are the same, and the treatment is the same and the cause is genes and stressors, and THE CURE is (Rich)/Yasko's plan. So, for one thing, if you throw emotions, stress, toxins and Viruses, Pathogens, gene abnormality all in the same box ie: " Stressors " ... what's the difference between Autism, CFS and everything else that people are sick with? And what is the point of paying any attention to toxins and pathogens that are rampant in our environment...or the treating, ending, AVOIDANCE, or blood supply screening of same? What about the severe disease process at work NOW, and the research and treatment of it? The current theory has included statements that the world's top ME/CFS researchers are WRONG, or " going nowhere " . That would of course mean therefore to ignore their treatment plans, too. Which is exactly what some people on this list are doing. Including people with cognitive/brain damage and on the edge of organ failure. This is a pretty giant and dangerous leap, for a theory by which not A SOLE person here so far has gone into remission, or been cured. The CDC also announced that our disease is " genes and stressors " . For them and our doctors, this will dovetail the theory that perhaps one once became ill due to a common virus, but is now remaining ill in some self perpetuating, dysfunctional handling of stress(ors). Not under siege by an infectious, or other, brain, cardiac, organ damage IT. Nor will they will be providing or allowing, expensive, long term supplements for healing. But " Cognitive Behavioral Therapy and/or Medications " .( Reeves, CDC, 2006) So, we might think twice before abandoning the World's ME/CFS Researchers, ME/CFS treatment, soley for genes/stressors and the promise of CURE thereof. Especially when Rich is plainly saying that he is not addressing ME/CFS, but Fukuda CFS, which he believes is the majority on this board. (Tho he hopes that this can help others, too) Sudden or Radical changes of protocol can severely damage an ME/CFS person, if that specifically is not what's being addressed. Katrina > >> > > So the current research case definition includes both epidemic and > > sporadic cases that exhibit the set of symptoms described. This is > > what on this list objects to so strenuously and so > > consistently. He was part of the epidemic outbreak in Incline > > Village. He does not appreciate the fact that the CDC committees > > lumped his case and those of others in the clusters to the sporadic > > cases, since there were big differences in the type of onset and he > > believes also in the severity of the symptoms. > >> > > The onset in the epidemic cases was sudden and severe. In the > > sporadic cases that meet the criteria of Fukuda et al., about half > > have a sudden onset that seems to be viral in its characteristics > > (flu-like), and about half have gradual onset. Some seem to have > > sort of a combination, in which the illness seems to come and go > > mildly for a while, and then they get hit hard at a certain point in > > time. > > I'm likely one of the epidemic cases, and I'm somewhere in between > here. I first had EBV or CMV or something in a dorm at UCLA in 1977, > and then it mostly went away -- " coming and going mildly, " as you put > it. > > Seven years later, in the fateful winter of '84-'85, I was living in > the Bay Area (Santa Clara) and traveling up to Tahoe every month or > six weeks for work. (I was covering the U.S. women's ski team for a > national sports magazine, and they were training up there.) The > illness started coming on that fall, and accelerated over the winter > and spring. By the summer of '85, I was deep in it. > > I'd already had a physically and emotionally exhausting 1984, and I > still believe the stress of that year at least helped set me up for > the fall. I didn't have many resources left to cope. > > Two of the Truckee teacher cluster - husband and wife, Gerald and > > Janice Kennedy had different onsets. Janice was sudden and Gerald > > developed over several months - but they both wound up with the same > > illness. > > This, to me, makes a lot of sense in the context of the genetic > thesis. Janice may have had some SNPs that made her much more > vulnerable to the bug, and thus fell very quickly into the CFS > symptom cascade. Gerald may have had fewer SNPs, and hence more > resistance -- it took longer for him to fall apart. > > > The reason I raise the point of symptom severity is to distinguish > > the illness from anything that could possibly happen from stress, > > burnout, or some kind of " allopathic load " . > > Why is it so hard to credit the idea that people whose bodies aren't > under biochemical stress -- who are relatively healthy, happy, eating > well, and so on -- are more resistant to breaking down under the > neuroimmune onslaught of CFS? At the very least, it may hit them more > slowly. This is true of every other disease under the sun; it's why > people try to eat well, get enough exercise, and generally stay healthy. > > I'm not arguing that general good health is the only factor; but that > it probably plays some kind of role that shouldn't be discounted > entirely. > > > But I use the extreme examples to show > > that researchers should consider mild cases to be a variant of > > something that is absolutely life destroying, rather than viewing > > extreme cases as mere flukes that they try to cram into their > > ridiculous notions that this is entire epidemic is just " burnout - > > plus maybe a virus and a bit of dysfunctional behavior " > > This illness raged through a community and didn't gave a damn about > > anyones stress or lack thereof. > > Dr Cheney chose me to be a CFS prototype, BECAUSE I HAD THE FEWEST > > PATHOGENS!!!! > > That is the complete and total opposite of allopathic load. > > I think it's a much wider combination of factors, not either-or. Even > a very healthy person -- like you (hell, like me until 1977) -- can > have a genetic predisposition that gives the disease a major leg up. > And even those who are genetically in pretty good shape can be more > easily compromised if their allostatic load is high. It's a whole lot > more subtle than that, and dependent on lots of variables. > > Sara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Mercuria <mercuria@...> wrote: > Why is it so hard to credit the idea that people whose bodies aren't under biochemical stress -- who are relatively healthy, happy, eating well, and so on -- are more resistant to breaking down under the neuroimmune onslaught of CFS? At the very least, it may hit them more slowly. This is true of every other disease under the sun; it's why people try to eat well, get enough exercise, and generally stay healthy. > > I'm not arguing that general good health is the only factor; but that it probably plays some kind of role that shouldn't be discounted > entirely. Doctors and society in general have worked vigorously to discount the notion that an epidemic has occurred - and the argument they use is " You can't discount the fact that you are probably mentally weak, genetically susceptible, and didn't take good care of yourself " . No matter how many times you point out that the epidemic " spread like an epidemic " , this " clue " is discounted and dismissed: " Well, I didn't get it - so it must have been something YOU did wrong " . I just described, again, how this illness raged through a population and gets blamed on " allostatic load " and " stress " when it just plain didn't act like burnout and bad diet - and you respond by reinforcing the argument that these factors should not be discounted. Don't you want researchers to discount them at least to the extent of recognizing that it is not " normal " for this illness to happen at all, to anyone? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 On Aug 18, 2006, at 8:00 AM, erikmoldwarrior wrote: > Mercuria <mercuria@...> wrote: >> Why is it so hard to credit the idea that people whose bodies aren't > under biochemical stress -- who are relatively healthy, happy, eating > well, and so on -- are more resistant to breaking down under the > neuroimmune onslaught of CFS? At the very least, it may hit them more > slowly. This is true of every other disease under the sun; it's why > people try to eat well, get enough exercise, and generally stay > healthy. >> >> I'm not arguing that general good health is the only factor; but that > it probably plays some kind of role that shouldn't be discounted >> entirely. > > > Doctors and society in general have worked vigorously to discount the > notion that an epidemic has occurred - and the argument they use > is " You can't discount the fact that you are probably mentally weak, > genetically susceptible, and didn't take good care of yourself " . > No matter how many times you point out that the epidemic " spread like > an epidemic " , this " clue " is discounted and dismissed: " Well, I > didn't > get it - so it must have been something YOU did wrong " . > I just described, again, how this illness raged through a population > and gets blamed on " allostatic load " and " stress " when it just plain > didn't act like burnout and bad diet - and you respond by reinforcing > the argument that these factors should not be discounted. > Don't you want researchers to discount them at least to the extent of > recognizing that it is not " normal " for this illness to happen at all, > to anyone? Thanks for at least asking me if I agree with your strawman. Of course I don't agree with it. But that also doesn't mean I want these factors discounted entirely -- mainly because the plain fact is that for every other infectious disease known to humankind, being genetically susceptible and physically weakened counts for quite a bit when it comes to who gets sick, and how sick they get. Fact is, people who get measles, malaria, mono, and everything else in between are subject to genetic susceptibility; and their resistance is only as good as their relative strength when the infection hit. If we try to argue that CFS is the first disease for which this isn't true, we're basically saying that this is somehow different than any other infection under the sun. And that doesn't really help the cause, either. That's a very daring scientific claim to make, and extreme claims require extreme proof. I don't think we're likely to summon that proof. If we did, we'd have to change some of the fundamental assumptions of modern medicine. ly, my dear, I think we've already got quite enough on our plate without adding that burden to it as well. I think evidence is building for the idea that genetics counted for a whole hell of a lot here, It explains why vigorously healthy people got so whacked by it; and why some people regained much of their lost function while others withered away. It also goes a long way toward explaining the various subgroups. In fact, it explains all these variations much more reasonably than any pathogen-based answer we've come up with over the past 20 years. If it's a choice between " you have bad genes " and " you're a crazy goldbricker, " there's no question which one I'll cop to first. And it may ultimately come down to just that choice. I didn't choose this damned disease; and I'm open to any scientific theory that explains how it chose me. " Bad genes " fits better than any thesis I've heard anyone come up with so far -- not least because it proves conclusively that we have a medical issue, not a psychological one. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 this illness raged through a population > Does that mean everybody got it? If not, how account for the ones who didn't. Especially if they were in the same household with someone who did. Genetics. Bingo. HAs there ever been an epidemic disease that wiped out everyone who came in contact with it? I imagine not- or nobody would be here anymore. Genetics Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Mercuria <mercuria@...> wrote: I didn't choose this damned disease; and I'm open to any scientific theory that explains how it chose me. " Bad genes " fits better than any thesis I've heard anyone come up with so far -- not least because it proves conclusively that we have a medical issue, not a psychological one. > Sara I agree about being open to any theory that explains what happened, and in order to do that, it must fit the facts. Genetic variability suggests that there will always be some component that is variable due to genetic differences. But when illnesses increase at a faster rate than the reproductive capacity of a species to generate an increased prevalence of the illness - the cause is to be found elsewhere. Autism has gone from one in ten thousand, to more than one in two hundred in the last thirty years. CFS has gone from being " I've never seen anything like this before " to a household word with scarcely anyone left who doesn't know someone with the illness - in only twenty years. As far as I know, neither autistics or CFSers are out there reproducing at a rate that can account for such a dramatic increase. So it is our task to explain to researchers that that even if they find a genetic correlation, that there must still be an " x factor " that is causing these genes to be expressed at an increasing rate of prevalence which exceeds reproductive possibility. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 " Adrienne G. " <duckblossm@...> wrote: > this illness raged through a population > > > > Does that mean everybody got it? If not, how account for the ones who didn't. Especially if they were in the same household with someone who did. Genetics. Bingo. > HAs there ever been an epidemic disease that wiped out everyone who came in contact with it? I imagine not- or nobody would be here anymore. Genetics > > Adrienne > Well, if you recall the " Black Plague " which ravaged Europe, the manner of innoculation made a huge difference. Flea transmission had a percentage of survival and recovery. But if you caught it by respiration of infected sputum from somebody coughing on you, your chances for survival were zero. Perhaps the recovery rate in CFS was similarly influenced by an initial vector which then passed into a different mode of transmission. Not only that, but zoonotic viruses are known to weaken with subsequent person to person transmission as the mutation which created their pathogenesis weakens. If you wished to determine the cause of the Plague, and saw that the illness raged through the population in the manner of an epidemic, I think you would prefer that researchers examine something that has the capacity to cause an epidemic rather than blaming it on your genetic susceptibility. When a " genetic illness " transcends the limitations of a genetic model, you must do as Polly Murray did, and ask how it can possibly defy statistical restrictions. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 , The point is that CFS is not purely genetic. It has a genetic component, and it has an " environmental " component. It takes both in the same person to produce onset. Rich > I agree about being open to any theory that explains what happened, > and in order to do that, it must fit the facts. > Genetic variability suggests that there will always be some component > that is variable due to genetic differences. But when illnesses > increase at a faster rate than the reproductive capacity of a species > to generate an increased prevalence of the illness - the cause is to be > found elsewhere. > Autism has gone from one in ten thousand, to more than one in two > hundred in the last thirty years. > CFS has gone from being " I've never seen anything like this before " to > a household word with scarcely anyone left who doesn't know someone > with the illness - in only twenty years. > As far as I know, neither autistics or CFSers are out there > reproducing at a rate that can account for such a dramatic increase. > So it is our task to explain to researchers that that even if they > find a genetic correlation, that there must still be an " x factor " that > is causing these genes to be expressed at an increasing rate of > prevalence which exceeds reproductive possibility. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 On Aug 18, 2006, at 9:53 PM, erikmoldwarrior wrote: > Well, if you recall the " Black Plague " which ravaged Europe, the > manner of innoculation made a huge difference. > Flea transmission had a percentage of survival and recovery. > But if you caught it by respiration of infected sputum from somebody > coughing on you, your chances for survival were zero. > Perhaps the recovery rate in CFS was similarly influenced by an > initial vector which then passed into a different mode of > transmission. Not only that, but zoonotic viruses are known to > weaken with subsequent person to person transmission as the mutation > which created their pathogenesis weakens. > If you wished to determine the cause of the Plague, and saw that the > illness raged through the population in the manner of an epidemic, I > think you would prefer that researchers examine something that has > the capacity to cause an epidemic rather than blaming it on your > genetic susceptibility. > When a " genetic illness " transcends the limitations of a genetic > model, you must do as Polly Murray did, and ask how it can possibly > defy statistical restrictions. Nobody here has said that CFS is exclusively a " genetic illness. " You're putting words in our mouths here. It's a strawman, and you can't make anybody defend it. Measles isn't a genetic illness, either. But, while it's an easy two- week ride for your average healthy white six-year-old whose ancestors adapted to it long ago, the same pathogen was 80% lethal for millions of native Americans whose systems couldn't summon the immunity to cope. The bug creates the sickness; but the genes determine how well the body can respond. We are saying (again) that it's becoming more credible all the time (as Shoemaker himself has found) that we're dealing with specific genetic issues that aren't a problem until they're subjected to just the wrong environmental situation. Not everybody has a severe physical reaction to mold toxins, either. But some of us have the bent genes that do. When we get a snootful of the wrong thing, all hell breaks loose. Most people don't have these issues. Lucky them. They've got some sweet protective genes that let them get away with thinking that we're the weird ones. There's another example in that very same Black Death epidemic you mention. Six hundred years later, it turned out that the descendants of that plague's survivors were, of all the people on the planet, also the most resistant to getting full-blown AIDS. They were the only ones surviving for ten years with HIV when everybody else was dead in three to five. Their bodies' genetic inheritance, believed now to be the result of the way the Black Death culled and concentrated a specific gene set in those regions, allowed them to mount a more effective response to HIV than most other people could muster. They still got HIV. And most of them still died of AIDS -- eventually. But, in the short and medium term, having the right genes literally made a life-or-death difference. It's not just the genes. It's not just the pathogens. It's not just the biological stressors. It's the dance between the three that determines who recovers, and who never will. That's true of all diseases; it's going to be damned surprising if it doesn't turn out to be true for CFS as well. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 That, or there are environmental loads on these genes that they are not prepared for. One researcher mentioned to me and was going to try and find a study he'd run across a while back, where one group of squirrels sickened from bubonic plague (they are carriers, esp rock squirrels) and another group did not. The difference was the heavy metal content in their soil. So it is possible that industrialization has led to levels of metals, pesticides, poisons...a depleted food supply...levels of sugar in the diet that are too high, indiscriminate use of antibiotics changing bowel flora, generations of children too many of whom were raised on baby formula etc etc. We not only have epidemics of autism and high rates of CFIDS we have an epidemic of type two diabetes, even in children, and obesity. It is also true that some of the bugs in ticks might be bioweaponized, perhaps mycoplasma was genetically altered, and/or perhaps the bugs in ticks have combined in novel and synergistic ways to make some people very sick. It is also true as Adrienne posted that genetics makes some people uniquely vulnerable to any pathogen and others less vulnerable and others not at all. No pathogen is universally destructive. And there have always been outbreaks; what tends to happen with all pandemics or outbreaks is they are more virulent initially. The pathogens that do best are the less virulent ones that can coexist with the host fairly amicably, so as epidemics spread they become milder. All the above is true, and likely to vary in its significance according to time, individual genetics, individual load, virulence of the particular pathogen (depending on its novelty in appearing in a particular group), and so on. To me, it isn't a good answer, although its an adequate answer and better than nothing, to take antibiotics in perpetuity. This has a downside, in breeding resistant bugs of all kinds within your own ecossytem, passing those resistant bugs on to others, suffering breakthrough infections from those resistant bugs, and giving other species such as fungi the upper hand. Over time this heavy antimicrobial therapy has a downside. It is far better than lying in bed without a life, if you can tolerate it. But if one were to have to remain on antimicorbial therapy it would be better at least to pulse it when the infection flared up. Also, antibiotics do work as anti inflammatories, which is why biotechs are trying to isolate that aspect of minocycline. And valtrex apparently may work on excess adenosine, which can be elevated in some folks. The answers are complex and each individual needs to study and experiment and find their own way. > So it is our task to explain to researchers that that even if they > find a genetic correlation, that there must still be an " x factor " that > is causing these genes to be expressed at an increasing rate of > prevalence which exceeds reproductive possibility. > - > Quote Link to comment Share on other sites More sharing options...
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