Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Sara, I can see better where you are coming from about focusing on the genes. THis won't go down very well, but I do not anticipate genetics will keep us out of the Psych, Pharma, or other restrictive realms. AS a matter of fact, people who are getting gene testing might want to do some homework on what may be the outcome of genetic/stressor findings on one's record...especially the younger. Do not count on Medical records remaining private, either. They are streamlining them, to be available in totality in an instant to any Medical or other Agency. In the April 06 CDC Press Conference, announcing the CFS gene/stressor findings, Reeves of the CDC, the primary investigator of CFS for 20 years, said a promising result of these studies, will be treatments such as Quote: " Cognitive Behavioral Therapy and/or medications " . This is at the same time that Klimas has a positive article in MS. Magazine about the genes affected being of the Immune and CNS systems. Which direction do we think these will be skewed in deciding direction, Policies, Health Care, benefits and treatments for us? Then, there is also the Bush plan to screen the entire US population for Mental Illness, with goal being to give custom made drugs to each person. It's called the Freedom Intitiative or something like that, and it already began in some states with screening mothers and school children. You can google it under " Bush to screen US population for Mental Illness " . My own County, with many years need for Mental Health services, ALL OF A SUDDEN has had a 20% jump in it's budget and are hiring bunches of new people (not all professionals). There is a Wellness Center planned to teach people how to eat, manage their medications and mental illnesses better. This sounds Fabulous and I hope and pray it helps. But I also know that ME/CFS and OTHER DISEASES are being diverted more to psychological and stress- " coping " disorders. With all of the hard Science in ME/CFS and other diseases discovered, but misinterpreted, unfunded, forgotten, or dimissed already, this only progresses. The modern field of genetics is in infancy stage. Obviously, with it's exciting potentials, there is a rush to utilize it, and to be the first to make discoveries. There's nothing wrong with that per se. But Geneticists themselves say they do not really understand it all yet, Scientifically, and that there are Humongous ethics issues involved (as I know you know). They include A) WHO will decide the direction of Medicine, Research, Treament, and Social policies based on Genetics...and what will those be? There are already major expensive rip-offs from Laboratories and others providing genetic testing and counsel for patients. By whom and how is that being monitored? There are also many other exciting aspects of Genomes...I guess maybe it's one debate area... but how the Genes are currently expressing is more important to some than just the ones we have sitting there. That is the work that Jonathon Kerr, Enlander, and Gow are doing. Part of it will be named after our CFSFMEx list member who passed away in Dec 05... Breckenridge. It's all very relevant and exciting, including to see what our genes tell us about these pathways. But jumping on the findings of " CFS-Like " people's genes findings, which seems to include abandoning or dismissing the exciting ME/CFS specific Research/Researchers (and need to showcase/fund) is a little scary to me, and frankly, similar to business as usual. Especially when no one doing it seems to be aware of all that may be involved in this " Genetics " and ME/CFS day and age. AS you said, even people with better genes and AIDS still died. " Funky genes " aren't going to save us, as things look so far. Katrina > >> 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 19, 2006 Report Share Posted August 19, 2006 Except for a total unwillingness to mess with antibiotics, (and thank you, Jill, for explaining more reasons to feel that way), I agree with Jill's view here, especially how the three elements may combine. The thing is, if the third element between bugs and genes IS environment, infectious events are going to continue increasing. Various bugs we may not yet have discovered, will emerge as debilitating or lethal. What then? More and more people on a lifetime of more and more antibiotics? I suppose that is a possible way to go. Since there is no end in sight to the corruption of the planet, that leaves us with only the genetics to work with. Work arounds. That has its down side, too; you enable people with vulnerabilities to breed more like themselves instead of letting natural selection run its course and eliminate their genes from the pool. There is another problem that I have never heard recognized, probably because it is too inflammatory. I learned of it through my late husband, who lived a tribal lifestyle for 85 yrs, starting in 1890. He told me that it used to be the case that if an infant survived a serious illness in it's first year, the parents could feel confident that this child would have a long, healthy, life. (Mind; the only treatments were herbal and spiritual for the most part.) But we, now, use heroic measure to preserve the lives and breeding potential of every child born. Think of what that does for the gene pool. I am not proposing we abandon the infants or the technology we have created to weaken ourselves. That is not gonna happen anyhow. I do not know the answer. Adrienne Re: Cort: overlaps and distinctions 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. > - > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 On Aug 19, 2006, at 6:26 AM, kattemayo wrote: > THis won't go down very well, but I do not anticipate genetics will > keep us out of the Psych, Pharma, or other restrictive realms. > > AS a matter of fact, people who are getting gene testing might want > to do some homework on what may be the outcome of genetic/stressor > findings on one's record...especially the younger. > > Do not count on Medical records remaining private, either. They are > streamlining them, to be available in totality in an instant to any > Medical or other Agency. Two things here. First: I'm a futurist, and this is an issue that gets debated often and at very high levels within the profession. Second, the geneticist who was in charge of assembling the database of information gathered for the Human Genome Project is a close social friend of my husband's and mine. (He's now a professor of genetics at a university here.) As you might imagine, there are few people in the world who've spent more time thinking about the implications of this information than he has. It's something that gets discussed whenever we're together with these friends. So these are issues I'm hardly unaware of. And my opinion is: we are not going to stop this particular train. But riding it is going to bring us to a very different place, and probably not a bad one in the end. One of the rules of thumb among futurists is that " All technology is dehumanizing in its first generation. " If you think about it historically, it's hard to find exceptions. New technologies require paradigm shifts. They pose challenges we're not conceptually prepared to handle. They surprise us with their demands. Beyond that, they're almost always half-baked from a design perspective -- after all, we've never done this before -- which means they create practical problems (pollution, disease, social effects) that take time to emerge, get recognized, and work through. Eventually, a second generation emerges (as is happening with both automobiles and nuclear power plants right now, to cite two examples) that usually resolves about 70% of the major problems, and is typically several times less damaging to society and the environment. At the same time, society evolves rules and paradigms that allow it to maximize the benefits, and guard against the dangers. At that point, the technology (whatever it is) becomes accepted as a normal and reasonable part of our experience. With that in mind: Yes, we're going to be at a stage in 20 years or so where everybody gets their whole genome mapped at birth. (It's too expensive now, but is coming down in price at an exponential pace. Our geneticist friend says we're less than a decade, perhaps much less, from a test that will map our entire genome for under $1000.) So, yeah, that information's going to be in everybody's computerized medical files. And what we are going to learn from this is that everybody has " bad genes " of one kind or another. Weaknesses and susceptibilities abound. You want to cut people out of insurance pools -- you're going to have cut *everybody* out, until there's nobody left to insure. You can't run a health care system by just focusing on the healthiest 10% of the population, which is what the insurance companies will try to do (no change there). But, in the end, this attempt will be the thing that finally illegitimizes them, and results in their being removed from the scene altogether. Politically, all that information should serve as a reminder to the last First World nation without national health care that the only way to deal with this is to spread the risk and provide government- sponsored medical services for everybody. You want your issues covered? Then pony up for other people to get their issues covered, too. It's called sharing the risk, and it's what insurance -- and government -- is supposed to do when it's working right. Socially, yes, there are going to be some horrible stories emerge in the early years. Governments, insurance companies, employers, and others will get into the information and use it to hurt people. There will be news stories, ghastly events, massive class-action suits, sweeping new laws. That's what it looks like when society assimilates a new technology. It'll take a few decades before we get the rules and systems worked out in ways that maximize the good and protect people from the bad. At the same time, the technology itself will move forward. My friend the geneticist says we're less than 10 years from the first treatments that will actually allow us to make permanent corrections to " bad genes. " Once we can make such corrections on any gene -- probably 20 to 30 years from now -- all the above concerns will be pretty much irrelevant. You've got bad genes, no problem. we fix 'em. Of course, that will have the potential to unleash a whole new set of issues about how we change ourselves. And in the process, it will create political, social, medical, and scientific shockwaves of its own. Worrying about it doesn't stop it. But looking ahead and planning for it can help us manage the change, and direct it in ways that increase benefit and reduce harm. As for CFS/ME: It seems highly likely to me that, as this unfolds and we understand more about the genes involved, the boundaries that define this disease are going to shift radically. Given how badly they were defined in the first place, I'm not afraid of this, either -- as long as those redefinitions bring us closer to something more accurately resembling truth -- a quality we've been very short on in the history of this disease. I've got no pet definition to defend here: the disease parameters we've got now seem clearly designed to prevent us from finding answers, rather than helping us. If finding a common gene set helps restore some clarity to this badly muddled effort and puts it back on track, I say bring it on. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Do I hear here a basic outlook that we are actually progressing toward a better future? Or just a different one? I am personally balanced between optimism and pessimism. I have no information that tells me humankind is one whit better off that it was at any other point in time. There are more people, and they tend to live longer, but I don't know that that adds up to improvement. Nor do I know that about any apparent change for the better. Adrienne Re: Re: Cort: overlaps and distinctions On Aug 19, 2006, at 6:26 AM, kattemayo wrote: > THis won't go down very well, but I do not anticipate genetics will > keep us out of the Psych, Pharma, or other restrictive realms. > > AS a matter of fact, people who are getting gene testing might want > to do some homework on what may be the outcome of genetic/stressor > findings on one's record...especially the younger. > > Do not count on Medical records remaining private, either. They are > streamlining them, to be available in totality in an instant to any > Medical or other Agency. Two things here. First: I'm a futurist, and this is an issue that gets debated often and at very high levels within the profession. Second, the geneticist who was in charge of assembling the database of information gathered for the Human Genome Project is a close social friend of my husband's and mine. (He's now a professor of genetics at a university here.) As you might imagine, there are few people in the world who've spent more time thinking about the implications of this information than he has. It's something that gets discussed whenever we're together with these friends. So these are issues I'm hardly unaware of. And my opinion is: we are not going to stop this particular train. But riding it is going to bring us to a very different place, and probably not a bad one in the end. One of the rules of thumb among futurists is that " All technology is dehumanizing in its first generation. " If you think about it historically, it's hard to find exceptions. New technologies require paradigm shifts. They pose challenges we're not conceptually prepared to handle. They surprise us with their demands. Beyond that, they're almost always half-baked from a design perspective -- after all, we've never done this before -- which means they create practical problems (pollution, disease, social effects) that take time to emerge, get recognized, and work through. Eventually, a second generation emerges (as is happening with both automobiles and nuclear power plants right now, to cite two examples) that usually resolves about 70% of the major problems, and is typically several times less damaging to society and the environment. At the same time, society evolves rules and paradigms that allow it to maximize the benefits, and guard against the dangers. At that point, the technology (whatever it is) becomes accepted as a normal and reasonable part of our experience. With that in mind: Yes, we're going to be at a stage in 20 years or so where everybody gets their whole genome mapped at birth. (It's too expensive now, but is coming down in price at an exponential pace. Our geneticist friend says we're less than a decade, perhaps much less, from a test that will map our entire genome for under $1000.) So, yeah, that information's going to be in everybody's computerized medical files. And what we are going to learn from this is that everybody has " bad genes " of one kind or another. Weaknesses and susceptibilities abound. You want to cut people out of insurance pools -- you're going to have cut *everybody* out, until there's nobody left to insure. You can't run a health care system by just focusing on the healthiest 10% of the population, which is what the insurance companies will try to do (no change there). But, in the end, this attempt will be the thing that finally illegitimizes them, and results in their being removed from the scene altogether. Politically, all that information should serve as a reminder to the last First World nation without national health care that the only way to deal with this is to spread the risk and provide government- sponsored medical services for everybody. You want your issues covered? Then pony up for other people to get their issues covered, too. It's called sharing the risk, and it's what insurance -- and government -- is supposed to do when it's working right. Socially, yes, there are going to be some horrible stories emerge in the early years. Governments, insurance companies, employers, and others will get into the information and use it to hurt people. There will be news stories, ghastly events, massive class-action suits, sweeping new laws. That's what it looks like when society assimilates a new technology. It'll take a few decades before we get the rules and systems worked out in ways that maximize the good and protect people from the bad. At the same time, the technology itself will move forward. My friend the geneticist says we're less than 10 years from the first treatments that will actually allow us to make permanent corrections to " bad genes. " Once we can make such corrections on any gene -- probably 20 to 30 years from now -- all the above concerns will be pretty much irrelevant. You've got bad genes, no problem. we fix 'em. Of course, that will have the potential to unleash a whole new set of issues about how we change ourselves. And in the process, it will create political, social, medical, and scientific shockwaves of its own. Worrying about it doesn't stop it. But looking ahead and planning for it can help us manage the change, and direct it in ways that increase benefit and reduce harm. As for CFS/ME: It seems highly likely to me that, as this unfolds and we understand more about the genes involved, the boundaries that define this disease are going to shift radically. Given how badly they were defined in the first place, I'm not afraid of this, either -- as long as those redefinitions bring us closer to something more accurately resembling truth -- a quality we've been very short on in the history of this disease. I've got no pet definition to defend here: the disease parameters we've got now seem clearly designed to prevent us from finding answers, rather than helping us. If finding a common gene set helps restore some clarity to this badly muddled effort and puts it back on track, I say bring it on. Sara This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Given the ME/CFS clinics that NHS is running in England, (and we're hearing stories about simlar in Belgium), where they force GET on ME patients, we may be better without. I'd rather the govwernment acted like they have a cluie before they start prescribing on this disease, especially when they prescribe the one thing *known* to make ME worse. - Bob N. On 8/19/06, Mercuria <mercuria@...> wrote: > > Politically, all that information should serve as a reminder to the > last First World nation without national health care that the only > way to deal with this is to spread the risk and provide government- > sponsored medical services for everybody. You want your issues > covered? Then pony up for other people to get their issues covered, > too. It's called sharing the risk, and it's what insurance -- and > government -- is supposed to do when it's working right. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Good post Sara. I would only point out that mapped the genome is only mapping the coding part (3%) and there's a lot more to learn about the rest of it, and we're starting to realize that so called junk dna is actually doing something . I wrote a post this morning but it didn't get through, maybe a glitch. In any case, my point was that with major pathways like methylation/glutathione, or for instance porphyrins/heme (something I'm very interested in as of last week...), you may end up with various insults disregulating them, or various vulnerable genes (thus genotype) and you end up with a phenotype: i.e. autism, type 2 diabetes, maybe CFIDS. That phenotype may be treatable or at least helped by restoring those fundadmental pathways, without yet knowing every single polymorphism involved. > As for CFS/ME: It seems highly likely to me that, as this unfolds and > we understand more about the genes involved, the boundaries that > define this disease are going to shift radically. Given how badly > they were defined in the first place, I'm not afraid of this, either > -- as long as those redefinitions bring us closer to something more > accurately resembling truth -- a quality we've been very short on in > the history of this disease. I've got no pet definition to defend > here: the disease parameters we've got now seem clearly designed to > prevent us from finding answers, rather than helping us. If finding a > common gene set helps restore some clarity to this badly muddled > effort and puts it back on track, I say bring it on. > > Sara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Mercuria <mercuria@...> wrote: > 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. > The example you are using is not one of genetics, but of programmed immune recognition to a pathogen, which is why you can train a Native American's immune system ability to cope with a vaccine - same as anyone else. Considering that I have the mold gene to which you refer, I am certainly not discounting the role of genetics, just putting it in perspective. As Dr Shoemaker said in Mold Warriors: " 's illness may not be from mold, but he has mold illness " . As I said to Dr Cheney at the beginning of the epidemic, " An infection induced reactivity to mold " . Without that infection, combined with the exposure, my genetic susceptibility would not have been unveiled. So when someone says that " it's your genetics " , they are completely missing the point. Genetics or not, I would not have had this illness if these other factors had been introduced. - - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 , two points, one is a question 1) Just curious, are you still on antibiotics or considering other/new antibiotics? Or are you entirely off them, doing well, and basically avoiding mold? 2) I don't think it stops there or that Sara is missing the point. The point to me is, what did that exposure do to your body? What pathways were disrupted? Can those pathways be restored, or their genetically-influenced, environmentally triggered, weaknesses/blocks, bypassed through other means than antibiotics? > > Considering that I have the mold gene to which you refer, I am > certainly not discounting the role of genetics, just putting it in > perspective. As Dr Shoemaker said in Mold Warriors: " 's illness > may not be from mold, but he has mold illness " . > As I said to Dr Cheney at the beginning of the epidemic, " An > infection induced reactivity to mold " . > Without that infection, combined with the exposure, my genetic > susceptibility would not have been unveiled. > So when someone says that " it's your genetics " , they are completely > missing the point. > Genetics or not, I would not have had this illness if these other > factors had been introduced. > - > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 This is very well stated, but fails to take into account that we are also rapidly reaching the tipover point in saving the planet to do all the gene testing and changing. In this scenario it's all about humans and truth is the humans have done some things without the wisdom to understand the consequences. Just because it can be done, should it be done? If we don't change directions soon we are definetly going to end up where we're headed. I have some optimism peppered with a good dose of reality check. My favorite saying for this is that the Titanic is going down and people are fighting about who gets to sit in what deck chair. I've been called a chicken little, but while we struggle mightily to regain a semblance of our health back the things that got us here in the first place must be addressed. This is my own view, but I do think that the " bad " genes are accelerating as the toxic nature of our environment continues to go on unstopped. I want to understand why our bodies our so susceptable to pathagens, metals, pollution of the air and water. What's causing the breakdown of systems that are supposed to protect us, but now hurt us and thus our very lives. I sincerely hope that before we do reach that point of no return as a lot of the scientist are now predicting some of us can actually enjoy a few years of what's left of our lives. I struggle with lyme and after reading Lab 257 am astounded at the arrogance and ignorance of people that either want to harm others or just don't care one way or the other if they do as long as their agenda is realized. A leap of medical wisdom is needed for sure, but also a huge leap of conscience wisdom as well so the decisions become advantageous for the many and not the few. Where have we heard that before? There is so much we need to find out, including how to undo what has assaulted our bodies. I'm 55 and feel like time may be running out. And, Sara, I agree with you that insurance companies have to go and we must take care of one another. No one should benefit from another's suffering in my not so humble opinion. Edy Mercuria <mercuria@...> wrote: On Aug 19, 2006, at 6:26 AM, kattemayo wrote: > THis won't go down very well, but I do not anticipate genetics will > keep us out of the Psych, Pharma, or other restrictive realms. > > AS a matter of fact, people who are getting gene testing might want > to do some homework on what may be the outcome of genetic/stressor > findings on one's record...especially the younger. > > Do not count on Medical records remaining private, either. They are > streamlining them, to be available in totality in an instant to any > Medical or other Agency. Two things here. First: I'm a futurist, and this is an issue that gets debated often and at very high levels within the profession. Second, the geneticist who was in charge of assembling the database of information gathered for the Human Genome Project is a close social friend of my husband's and mine. (He's now a professor of genetics at a university here.) As you might imagine, there are few people in the world who've spent more time thinking about the implications of this information than he has. It's something that gets discussed whenever we're together with these friends. So these are issues I'm hardly unaware of. And my opinion is: we are not going to stop this particular train. But riding it is going to bring us to a very different place, and probably not a bad one in the end. One of the rules of thumb among futurists is that " All technology is dehumanizing in its first generation. " If you think about it historically, it's hard to find exceptions. New technologies require paradigm shifts. They pose challenges we're not conceptually prepared to handle. They surprise us with their demands. Beyond that, they're almost always half-baked from a design perspective -- after all, we've never done this before -- which means they create practical problems (pollution, disease, social effects) that take time to emerge, get recognized, and work through. Eventually, a second generation emerges (as is happening with both automobiles and nuclear power plants right now, to cite two examples) that usually resolves about 70% of the major problems, and is typically several times less damaging to society and the environment. At the same time, society evolves rules and paradigms that allow it to maximize the benefits, and guard against the dangers. At that point, the technology (whatever it is) becomes accepted as a normal and reasonable part of our experience. With that in mind: Yes, we're going to be at a stage in 20 years or so where everybody gets their whole genome mapped at birth. (It's too expensive now, but is coming down in price at an exponential pace. Our geneticist friend says we're less than a decade, perhaps much less, from a test that will map our entire genome for under $1000.) So, yeah, that information's going to be in everybody's computerized medical files. And what we are going to learn from this is that everybody has " bad genes " of one kind or another. Weaknesses and susceptibilities abound. You want to cut people out of insurance pools -- you're going to have cut *everybody* out, until there's nobody left to insure. You can't run a health care system by just focusing on the healthiest 10% of the population, which is what the insurance companies will try to do (no change there). But, in the end, this attempt will be the thing that finally illegitimizes them, and results in their being removed from the scene altogether. Politically, all that information should serve as a reminder to the last First World nation without national health care that the only way to deal with this is to spread the risk and provide government- sponsored medical services for everybody. You want your issues covered? Then pony up for other people to get their issues covered, too. It's called sharing the risk, and it's what insurance -- and government -- is supposed to do when it's working right. Socially, yes, there are going to be some horrible stories emerge in the early years. Governments, insurance companies, employers, and others will get into the information and use it to hurt people. There will be news stories, ghastly events, massive class-action suits, sweeping new laws. That's what it looks like when society assimilates a new technology. It'll take a few decades before we get the rules and systems worked out in ways that maximize the good and protect people from the bad. At the same time, the technology itself will move forward. My friend the geneticist says we're less than 10 years from the first treatments that will actually allow us to make permanent corrections to " bad genes. " Once we can make such corrections on any gene -- probably 20 to 30 years from now -- all the above concerns will be pretty much irrelevant. You've got bad genes, no problem. we fix 'em. Of course, that will have the potential to unleash a whole new set of issues about how we change ourselves. And in the process, it will create political, social, medical, and scientific shockwaves of its own. Worrying about it doesn't stop it. But looking ahead and planning for it can help us manage the change, and direct it in ways that increase benefit and reduce harm. As for CFS/ME: It seems highly likely to me that, as this unfolds and we understand more about the genes involved, the boundaries that define this disease are going to shift radically. Given how badly they were defined in the first place, I'm not afraid of this, either -- as long as those redefinitions bring us closer to something more accurately resembling truth -- a quality we've been very short on in the history of this disease. I've got no pet definition to defend here: the disease parameters we've got now seem clearly designed to prevent us from finding answers, rather than helping us. If finding a common gene set helps restore some clarity to this badly muddled effort and puts it back on track, I say bring it on. Sara 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 19, 2006, at 9:24 AM, Adrienne G. wrote: > Do I hear here a basic outlook that we are actually progressing > toward a better future? Or just a different one? Better in some ways. Worse in others. Different? That much is absolutely guaranteed. What you do hear is a faith, informed by history, that these changes are seldom pretty in the short run, but eventually get worked out -- generally to the good -- in the long run. How much you want to worry plays a big role in how long a view you choose to take (and vice versa). > I am personally balanced between optimism and pessimism. I have no > information that tells me humankind is one whit better off that it > was at any other point in time. There are more people, and they > tend to live longer, but I don't know that that adds up to > improvement. Nor do I know that about any apparent change for the > better. I have a minister friend who, at 50, had been through a tough five years with his family healthwise. His daughter had had a spinal condition that twisted her body over time. It was fixed with surgery. His wife had a serious bout of breast cancer, which she survived con brio. He had glaucoma, which was being skillfully managed and posed no threat to his vision. He said to me once: " You know: If this was just 25 years ago, my wife would be dead, my daughter would be a cripple, and I would be blind. Instead, we're all fine, and can expect to grow old together as a family. This is one amazing world we live in. " Human ingenuity creates stuff that helps and stuff that harms. But, collectively, we're constantly gathering information and making value choices that, over the long arc of time, maximize the good and minimize the harm. The fact that there are now more of us -- and our technology is moving exponentially faster by the year -- may only amplify the effects of these choices in the years ahead. And that, to me, is a reason for hope. Apart from that, though: Information and planning can prepare us to meet the challenges. Fear and worry will not -- and are therefore not worth wasting time or energy on, no matter what the ultimate outcome turns out to be. Sara 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 19, 2006, at 10:01 AM, jill1313 wrote: > Good post Sara. I would only point out that mapped the genome is only > mapping the coding part (3%) and there's a lot more to learn about the > rest of it, and we're starting to realize that so called junk dna is > actually doing something . Yeah, and hearing Francis hold forth on that is fascinating, too. Researchers at UC Santa Cruz announced this week that they've isolated one of these " junk " genes that, as it turns out, may be THE major thing that keeps us from developing into chimpanzees. He insists that 97% isn't junk at all -- just a lot of really interesting stuff we don't know how to extract the information out of yet. > I wrote a post this morning but it didn't get through, maybe a > glitch. In any case, my point was that with major pathways like > methylation/glutathione, or for instance porphyrins/heme (something > I'm very interested in as of last week...), you may end up with > various insults disregulating them, or various vulnerable genes (thus > genotype) and you end up with a phenotype: i.e. autism, type 2 > diabetes, maybe CFIDS. That phenotype may be treatable or at least > helped by restoring those fundadmental pathways, without yet knowing > every single polymorphism involved. That's hugely promising in the short term, I agree. Again: it's a mistake to insist that it's only one factor or another -- the real problem is in the process that develops between a variety of factors. It's not a single broken part: it's a whole dysfunctional system with several interrelating factors in play. Across the sciences, for the past 30 years or so, mechanistic " pile of parts " thinking has been giving way to a more systems-oriented approach to viewing the world. Systems theory and systems thinking (which were first codified and pioneered at MIT) are becoming essential disciplines for anyone working in science or technology, and many of the better high schools and universities are now actively teaching it. But, for some reason, this change in thinking seems to be moving more slowly in medicine than in other disciplines (in computer science, environmental science, and geology -- just to name a few -- it's already a given). Doctors are still hamstrung by Kock's Postulates, locked into a model of disease that demands ONE pathogen that predictably results in ONE disease, which in turn responds universally to ONE cure. Those postulates are about 300 years old, and clearly outdated -- but they're not going out the window without a fight, no matter how obviously limited they may be. That's not the way the world works. It's sure as hell not how most immune disorders work -- which explains why the medical profession has struggled so mightily to accept the allergy theory (it took three generations for that one to soak in), MS (which took 30+ years) and us. Genetic medicine is also very systems-based -- which means that, no matter how sound the science behind it is, it's also going to take longer than it should to gain widespread understanding and acceptance among doctors. They are simply not trained to see the world that way. However, in the end, the advent of genetic medicine will also ultimately be the thing that finally pushes Koch out the window. It's just going to take a couple generations for the dinosaurs to die off. Do I sound like an optimist now? Not in the short term, which probably includes the rest of my lifetime. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 >>>>and you end up with a phenotype: i.e. autism, type 2 diabetes, maybe CFIDS. That phenotype may be treatable or at least helped by restoring those fundadmental pathways, without yet knowing every single polymorphism involved.<<<<< I think that's probably true, but also after some long term illness, the phenotype is " stuck " . It's going to need something more radical than what we have accessible (tho rapidly changing I hope). ALong the lines of stem cells, gene therapies. While we do these other testing and treatment modalities, it's why I want us to keep/put full attention and backing to the ME-ICD/CFS researchers, because I believe that's where they are heading. If the " people " , in this case the " patients " , ME/CFS, don't know about the deeper issues that Sara ran down, and others,the technology is not going to be benefitting us, and even, as she spoke of could put us in the dehumanizing cycle of events. Especially if we do not " claim our space " (ME-ICD/CFS), (rather than solely generic categories), and the Research and treatment that is directed *precisely* at us. I hope that younger people especially will consider these points, because events are happening rapidly, with a great deal of suppression and skewed PR. About ME/CFS specifically, and Science in general {Note: Huge, unprecedented number of WhistleBlowers from within Scientific Community}. We really have no idea what's going on there! We have to keep established that there is an " us " , a formerly healthy community, now ill for decades, and worthy of specific focus and funding, so we, and others (Equally at risk as us), don't end up as collateral damage at the side of the mass transit highway speeding along...Scientifically, Culturally. The Researchers and patients who have seen the totality of these issues and pertinance to ME-ICD/CFS, evolve, and by *what methods=the red flags...are retiring, passing, underground, burned out. And the facts, with them, if we don't listen. Katrina > > Good post Sara. I would only point out that mapped the genome is only > mapping the coding part (3%) and there's a lot more to learn about the > rest of it, and we're starting to realize that so called junk dna is > actually doing something . > > I wrote a post this morning but it didn't get through, maybe a > glitch. In any case, my point was that with major pathways like > methylation/glutathione, or for instance porphyrins/heme (something > I'm very interested in as of last week...), you may end up with > various insults disregulating them, or various vulnerable genes (thus > genotype) and you end up with a phenotype: i.e. autism, type 2 > diabetes, maybe CFIDS. That phenotype may be treatable or at least > helped by restoring those fundadmental pathways, without yet knowing > every single polymorphism involved. > > > As for CFS/ME: It seems highly likely to me that, as this unfolds and > > we understand more about the genes involved, the boundaries that > > define this disease are going to shift radically. Given how badly > > they were defined in the first place, I'm not afraid of this, either > > -- as long as those redefinitions bring us closer to something more > > accurately resembling truth -- a quality we've been very short on in > > the history of this disease. I've got no pet definition to defend > > here: the disease parameters we've got now seem clearly designed to > > prevent us from finding answers, rather than helping us. If finding a > > common gene set helps restore some clarity to this badly muddled > > effort and puts it back on track, I say bring it on. > > > > Sara > > > 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 19, 2006, at 10:21 AM, Edy Rayfield wrote: > This is very well stated, but fails to take into account that we > are also rapidly reaching the tipover point in saving the planet to > do all the gene testing and changing. In this scenario it's all > about humans and truth is the humans have done some things without > the wisdom to understand the consequences. Just because it can be > done, should it be done? If we don't change directions soon we are > definetly going to end up where we're headed. I have some optimism > peppered with a good dose of reality check. My favorite saying for > this is that the Titanic is going down and people are fighting > about who gets to sit in what deck chair. I've been called a > chicken little, but while we struggle mightily to regain a > semblance of our health back the things that got us here in the > first place must be addressed. > This is my own view, but I do think that the " bad " genes are > accelerating as the toxic nature of our environment continues to go > on unstopped. I want to understand why our bodies our so > susceptable to pathagens, metals, pollution of the air and water. > What's causing the breakdown of systems that are supposed to > protect us, but now hurt us and thus our very lives. What's happening is not " bad genes accelerating, " but rather natural selection in progress. This is, in short, what evolution looks like. It is NOT pretty, but it is predictable. And, for better or worse, the process is specifically oriented toward reducing " bad genes " over the long haul, rather than accelerating them. We're bombarding our bodies with stuff they don't have the ability to handle. Some of us will turn out to have genetic adaptations that help us process this stuff. Those lucky genetic lottery winners will survive, thrive, and carry their genes forward to future generations. Others of us have genetic adaptations that make us highly vulnerable to this stuff. We won't do so well -- and, over time, if we can't figure out practical corrections, our genes will be less likely to be transmitted to future generations. In time, humanity as a whole will make the genetic adaptations (though there may be a huge die-off involved, as there was with the plague, which will be hard on individuals, families, and cultures). Our best hope, of course, is to understand what we're doing to ourselves, and take steps to stop it before that die-off occurs. Another thing to remember here: The pathogens that cause virulent illness are being naturally selected, too -- and generally, they tend to select for less virulence over time. If you're a germ, there's no evolutionary benefit in killing off your host in a matter of days -- you'd rather have that host living, breathing, moving around, spreading your children from hand to hand, and thus giving your tribe the means to increase. Dead hosts spread no germs. The bugs that evolve to allow their hosts to live longer are the evolutionary winners. Which is why, over time, virulent pathogens tend to become more mild in their effects. I think we're already seeing this with AIDS: there are strains of the virus now emerging that are significantly less devastating than the ones we first saw 25 years ago. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 I live with a mixture of hope and dismay- and some worry. As far as that family that still exists; at what cost to the well-being of others? Globally, I mean. Adrienne Re: Re: Cort: overlaps and distinctions On Aug 19, 2006, at 9:24 AM, Adrienne G. wrote: > Do I hear here a basic outlook that we are actually progressing > toward a better future? Or just a different one? Better in some ways. Worse in others. Different? That much is absolutely guaranteed. What you do hear is a faith, informed by history, that these changes are seldom pretty in the short run, but eventually get worked out -- generally to the good -- in the long run. How much you want to worry plays a big role in how long a view you choose to take (and vice versa). > I am personally balanced between optimism and pessimism. I have no > information that tells me humankind is one whit better off that it > was at any other point in time. There are more people, and they > tend to live longer, but I don't know that that adds up to > improvement. Nor do I know that about any apparent change for the > better. I have a minister friend who, at 50, had been through a tough five years with his family healthwise. His daughter had had a spinal condition that twisted her body over time. It was fixed with surgery. His wife had a serious bout of breast cancer, which she survived con brio. He had glaucoma, which was being skillfully managed and posed no threat to his vision. He said to me once: " You know: If this was just 25 years ago, my wife would be dead, my daughter would be a cripple, and I would be blind. Instead, we're all fine, and can expect to grow old together as a family. This is one amazing world we live in. " Human ingenuity creates stuff that helps and stuff that harms. But, collectively, we're constantly gathering information and making value choices that, over the long arc of time, maximize the good and minimize the harm. The fact that there are now more of us -- and our technology is moving exponentially faster by the year -- may only amplify the effects of these choices in the years ahead. And that, to me, is a reason for hope. Apart from that, though: Information and planning can prepare us to meet the challenges. Fear and worry will not -- and are therefore not worth wasting time or energy on, no matter what the ultimate outcome turns out to be. Sara This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 wrote; It's just going to take a couple generations for the dinosaurs to die off. Do I sound like an optimist now? Not in the short term, which probably includes the rest of my lifetime. During my lunch break today, I just ahppened to lister to Weil on PBS, speaking about aging, advising people not to go chasing genetic pie-in-the-sky, because understanding is so far off. (Seemed he was saying the whole endeavor, at least re: aging, was a waste of time, but not clear.) He advised people to learn to live well. FWIW. Adrienne This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Seems to me maybe the definition of pathagen isn't clear. It's possible that on a planetary basis humans are a pathagen and if the planet had an immune system it might like to shrug us off. In the meantime future generations might look back and say to themselves what were they thinking dumping all the garbage into the water? Maybe we can learn from the HIV pathagen? Slow it down fellas. Mercuria <mercuria@...> wrote: On Aug 19, 2006, at 10:21 AM, Edy Rayfield wrote: > This is very well stated, but fails to take into account that we > are also rapidly reaching the tipover point in saving the planet to > do all the gene testing and changing. In this scenario it's all > about humans and truth is the humans have done some things without > the wisdom to understand the consequences. Just because it can be > done, should it be done? If we don't change directions soon we are > definetly going to end up where we're headed. I have some optimism > peppered with a good dose of reality check. My favorite saying for > this is that the Titanic is going down and people are fighting > about who gets to sit in what deck chair. I've been called a > chicken little, but while we struggle mightily to regain a > semblance of our health back the things that got us here in the > first place must be addressed. > This is my own view, but I do think that the " bad " genes are > accelerating as the toxic nature of our environment continues to go > on unstopped. I want to understand why our bodies our so > susceptable to pathagens, metals, pollution of the air and water. > What's causing the breakdown of systems that are supposed to > protect us, but now hurt us and thus our very lives. What's happening is not " bad genes accelerating, " but rather natural selection in progress. This is, in short, what evolution looks like. It is NOT pretty, but it is predictable. And, for better or worse, the process is specifically oriented toward reducing " bad genes " over the long haul, rather than accelerating them. We're bombarding our bodies with stuff they don't have the ability to handle. Some of us will turn out to have genetic adaptations that help us process this stuff. Those lucky genetic lottery winners will survive, thrive, and carry their genes forward to future generations. Others of us have genetic adaptations that make us highly vulnerable to this stuff. We won't do so well -- and, over time, if we can't figure out practical corrections, our genes will be less likely to be transmitted to future generations. In time, humanity as a whole will make the genetic adaptations (though there may be a huge die-off involved, as there was with the plague, which will be hard on individuals, families, and cultures). Our best hope, of course, is to understand what we're doing to ourselves, and take steps to stop it before that die-off occurs. Another thing to remember here: The pathogens that cause virulent illness are being naturally selected, too -- and generally, they tend to select for less virulence over time. If you're a germ, there's no evolutionary benefit in killing off your host in a matter of days -- you'd rather have that host living, breathing, moving around, spreading your children from hand to hand, and thus giving your tribe the means to increase. Dead hosts spread no germs. The bugs that evolve to allow their hosts to live longer are the evolutionary winners. Which is why, over time, virulent pathogens tend to become more mild in their effects. I think we're already seeing this with AIDS: there are strains of the virus now emerging that are significantly less devastating than the ones we first saw 25 years ago. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Hi all, there was an article in the Los Angeles Times last week called " A Primeval Tide of Toxins " (see excerpt below). It seems relevant to this thread about genetics, evolution, and the future. I also saw Al Gore's " An Inconvenient Truth " which I found very scary. Vickie http://www.latimes.com/news/local/oceans/la-me- ocean30jul30,0,6670018,full.story The fireweed began each spring as tufts of hairy growth and spread across the seafloor fast enough to cover a football field in an hour. When fishermen touched it, their skin broke out in searing welts. Their lips blistered and peeled. Their eyes burned and swelled shut. Water that splashed from their nets spread the inflammation to their legs and torsos. ...... The venomous weed, known to scientists as Lyngbya majuscula, has appeared in at least a dozen other places around the globe. It is one of many symptoms of a virulent pox on the world's oceans. In many places — the atolls of the Pacific, the shrimp beds of the Eastern Seaboard, the fiords of Norway — some of the most advanced forms of ocean life are struggling to survive while the most primitive are thriving and spreading. Fish, corals and marine mammals are dying while algae, bacteria and jellyfish are growing unchecked. Where this pattern is most pronounced, scientists evoke a scenario of evolution running in reverse, returning to the primeval seas of hundreds of millions of years ago. B.C. , a marine ecologist and paleontologist at the Scripps Institution of Oceanography in La Jolla, says we are witnessing " the rise of slime. " ..... uses a homespun analogy to illustrate what is happening. The world's 6 billion inhabitants, he says, have failed to follow a homeowner's rule of thumb: Be careful what you dump in the swimming pool, and make sure the filter is working. " We're pushing the oceans back to the dawn of evolution, " said, " a half-billion years ago when the oceans were ruled by jellyfish and bacteria. " > > > This is very well stated, but fails to take into account that we > > are also rapidly reaching the tipover point in saving the planet to > > do all the gene testing and changing. In this scenario it's all > > about humans and truth is the humans have done some things without > > the wisdom to understand the consequences. Just because it can be > > done, should it be done? If we don't change directions soon we are > > definetly going to end up where we're headed. I have some optimism > > peppered with a good dose of reality check. My favorite saying for > > this is that the Titanic is going down and people are fighting > > about who gets to sit in what deck chair. I've been called a > > chicken little, but while we struggle mightily to regain a > > semblance of our health back the things that got us here in the > > first place must be addressed. > > This is my own view, but I do think that the " bad " genes are > > accelerating as the toxic nature of our environment continues to go > > on unstopped. I want to understand why our bodies our so > > susceptable to pathagens, metals, pollution of the air and water. > > What's causing the breakdown of systems that are supposed to > > protect us, but now hurt us and thus our very lives. > > What's happening is not " bad genes accelerating, " but rather natural > selection in progress. This is, in short, what evolution looks like. > It is NOT pretty, but it is predictable. And, for better or worse, > the process is specifically oriented toward reducing " bad genes " over > the long haul, rather than accelerating them. > > We're bombarding our bodies with stuff they don't have the ability to > handle. Some of us will turn out to have genetic adaptations that > help us process this stuff. Those lucky genetic lottery winners will > survive, thrive, and carry their genes forward to future generations. > Others of us have genetic adaptations that make us highly vulnerable > to this stuff. We won't do so well -- and, over time, if we can't > figure out practical corrections, our genes will be less likely to be > transmitted to future generations. > > In time, humanity as a whole will make the genetic adaptations > (though there may be a huge die-off involved, as there was with the > plague, which will be hard on individuals, families, and cultures). > Our best hope, of course, is to understand what we're doing to > ourselves, and take steps to stop it before that die-off occurs. > > Another thing to remember here: The pathogens that cause virulent > illness are being naturally selected, too -- and generally, they tend > to select for less virulence over time. If you're a germ, there's no > evolutionary benefit in killing off your host in a matter of days -- > you'd rather have that host living, breathing, moving around, > spreading your children from hand to hand, and thus giving your tribe > the means to increase. Dead hosts spread no germs. The bugs that > evolve to allow their hosts to live longer are the evolutionary winners. > > Which is why, over time, virulent pathogens tend to become more mild > in their effects. I think we're already seeing this with AIDS: there > are strains of the virus now emerging that are significantly less > devastating than the ones we first saw 25 years ago. > > Sara > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 " jill1313 " <jenbooks13@...> wrote: > > , two points, one is a question > > 1) Just curious, are you still on antibiotics or considering other/new antibiotics? Or are you entirely off them, doing well, and basically avoiding mold? > > 2) what did that exposure do to your body? What pathways > were disrupted? Can those pathways be restored, or their genetically-influenced, environmentally triggered, weaknesses/blocks, bypassed through other means than antibiotics? > I'm not on antibiotics. I just had a very peculiar experience of being told that my options had completely run out and that doctors could do nothing for me, and I managed to find something that helped anyway. Dr Shoemaker believes that the dysregulation can be successfully addressed, which would be nice, so I can stop this crazy lifestyle of mold avoidance - which is the only therapy that I'm doing. But it takes research, and to get that, it requires people to understand that biotoxin mediation of inflammatory responses is worth researching. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Okay...you were on antibiotics for a while, right, and they helped? Or do I have this history wrong. It seems to me you were sick, took antibiotics, slowly got better, but still apparently have to totally avoid molds. But before you got sick, were you sensitive to molds, or is that something you feel was triggered and now perpetuates itself? Thanx...just curious... > > > > , two points, one is a question > > > > 1) Just curious, are you still on antibiotics or considering > other/new antibiotics? Or are you entirely off them, doing well, and > basically avoiding mold? > > > > 2) what did that exposure do to your body? What pathways > > were disrupted? Can those pathways be restored, or their > genetically-influenced, environmentally triggered, weaknesses/blocks, > bypassed through other means than antibiotics? > > > > I'm not on antibiotics. > I just had a very peculiar experience of being told that my options > had completely run out and that doctors could do nothing for me, and > I managed to find something that helped anyway. > Dr Shoemaker believes that the dysregulation can be successfully > addressed, which would be nice, so I can stop this crazy lifestyle of > mold avoidance - which is the only therapy that I'm doing. > But it takes research, and to get that, it requires people to > understand that biotoxin mediation of inflammatory responses is worth > researching. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 " jill1313 " <jenbooks13@...> wrote: > > Okay...you were on antibiotics for a while, right, and they helped? Or do I have this history wrong. It seems to me you were sick, took antibiotics, slowly got better, but still apparently have to totally avoid molds. But before you got sick, were you sensitive to molds, or is that something you feel was triggered and now perpetuates itself? > Thanx...just curious... I tested positive for Mycoplasma Fermentans in '99, and tried Garth's pulsed Doxy protocol for nine months, hoping that this would help me beat the mold reactivity. It didn't, so I abandoned the effort. Yes, I was reactive to mold prior to CFS. Afterwards my reactivity was absolutely life threatening. I thought that it was more than coincidental that this same mold that has such an effect on me showed up so often in clusters of CFS - especially the one that started it all, at my old high school, Truckee HS. It was even more interesting to accompany CFSers into mold exposures and watch them have a response, usually while they expressly denied having any problems with mold - and tended to blame it upon chemicals. Mold has become an even more startling paradigm shift than CFS. I know for certain that people were unaware of the mycotoxin connection, because I spent twenty years arguing with them about it. Then, just within a few years, " toxic mold " has become a household word, and people who are being driven from their houses, schools, and jobs are having to fight doctors just as hard as CFSers ever did. And despite this emerging awareness of mold, and the demonstrable connection to CFS cohorts, and even the publication of Mold Warriors, Doctors, researchers, and CFSers themselves turn and run from this clue instead of showing the reasonable interest one would think that people searching for clues would have. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Thanx . I think I posted on here at one point Kathleen Dickson's idea that some of these bugs, like lyme, shed mycotoxins and who knows what else that causes your immune system to have an anergy to fungus, to not mount a proper response against it--and then if you have genetics for mold sensitivity and reactivity, you sort of have a double whammy. If you're carrying around stuff inside that you have a genetic hyper-reactivity to, then I would assume you could also get very sensitive to molds in the environment. > > > > Okay...you were on antibiotics for a while, right, and they helped? > Or do I have this history wrong. It seems to me you were sick, took > antibiotics, slowly got better, but still apparently have to totally > avoid molds. But before you got sick, were you sensitive to molds, or > is that something you feel was triggered and now perpetuates itself? > > Thanx...just curious... > > I tested positive for Mycoplasma Fermentans in '99, and tried > Garth's pulsed Doxy protocol for nine months, hoping that this would > help me beat the mold reactivity. > It didn't, so I abandoned the effort. > Yes, I was reactive to mold prior to CFS. > Afterwards my reactivity was absolutely life threatening. > I thought that it was more than coincidental that this same mold > that has such an effect on me showed up so often in clusters of CFS - > especially the one that started it all, at my old high school, > Truckee HS. > It was even more interesting to accompany CFSers into mold exposures > and watch them have a response, usually while they expressly denied > having any problems with mold - and tended to blame it upon chemicals. > Mold has become an even more startling paradigm shift than CFS. > I know for certain that people were unaware of the mycotoxin > connection, because I spent twenty years arguing with them about it. > Then, just within a few years, " toxic mold " has become a household > word, and people who are being driven from their houses, schools, and > jobs are having to fight doctors just as hard as CFSers ever did. > And despite this emerging awareness of mold, and the demonstrable > connection to CFS cohorts, and even the publication of Mold > Warriors, Doctors, researchers, and CFSers themselves turn and run > from this clue instead of showing the reasonable interest one would > think that people searching for clues would have. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Hi Rich What do you mean by " sporadic cases? " Thanks Doris Re: Cort: overlaps and distinctions 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. Recent Activity a.. 15New Members Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 Hi, Doris. By " sporadic, " I mean cases that did not occur in epidemics or clusters, i.e. many cases in the same limited geographical region over a limited time period. I'm talking about people scattered all over, who develop CFS one by one, spread over time and geography. Rich > > Hi Rich > What do you mean by " sporadic cases? " > > Thanks > Doris Quote Link to comment Share on other sites More sharing options...
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