Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Ok, so there's a couple of things here which ring bells for me, but I'm going to need to sit down and draw pictures to make sense of the scientific language. This time of day it's all gobbly gook to me (well, yes any time of day, but more so just now!). So back to the bells and stress and oestrogen. The stress bit fits for me - long term, then shortly after CFS/MCS was diagnosed, my son died. The doc said to me, " well that's it, no sense treating you, you'll never get better. " Well hey thanks. Fortunately, I'm an optimist - but here I am ten years later still sick. Now the next bit, the oestrogen bit. I always had hormone inbalances, including not enough oestrogen. How does that fit with your hypothesis? Now I'm taking extra oestrogen (post menopause) and relapsed. You got me thinking, that's for sure but I'd like to hear what others have to say, and I want to draw my pictures in the morning, when I'm brighter. Thanks for your research efforts. I'm impressed. Men, Women and CFS Hi, all. Well, I was in the medical library most of the day, today, doing a lot of reading and thinking. I think a few more pieces of the puzzle have come together, and I would like to tell you about it. By way of introduction, there have been several things rattling around in my head lately: First, long-time readers will know that historically on the lists I have been beaten up fairly soundly at times for suggesting that emotional stress could be a contributor to the onset of CFS in some cases. I think that for the most part it has been men on the lists who have done most of the beating. On the other hand, I have been told by quite a few others (I think mostly women) that emotional stress was a major contributor to the onset of their illness. It was tempting to suspect that the men were just being macho, but what about taking the revolutionary point of view that (a) they know what they're talking about, and ( they just might happen to be telling the truth? Could it be that things are different for men and women? Second, I've been trying to figure out if I have a strong enough case to send an abstract to the IACFS hypothesizing that I can explain the reason for the much higher prevalence of CFS in women than in men. Third, has written me a couple of times asking what I have to say about Jill 's second talk at the April DAN! conference in which she described the " female advantage " in autism, which involves estrogen stimulation of the methylation cycle and glutathione production. Well, now I think I have an answer for all of those things. Here's the story: When people are under stress, their sympathoadrenomedullary system puts out epinephrine (adrenaline). Epinephrine is a catecholamine. Normally it is detoxed (metabolized) by COMT (catechol-O-methyl transferase), which takes a methyl group from SAMe and attaches it to the epinephrine molecule. This de-activates it, and it is eventually excreted. If they have a SNP in their COMT that causes it to be less active, then the epinephrine will build up to higher concentrations and stay around longer, which will allow more of it to react with oxygen and form a semiquinone. The semiquinone can react with oxygen to form a quinone and a superoxide free radical. Normally, quinones are conjugated by glutathione with the help of glutathione transferase enzymes, and then they are excreted from the body. However, if the person has SNPs in the glutathione peroxidase enzymes, then the quinones can hang around longer. There are enzymes that convert quinones back to semiquinones, and then the semiquinones can react with oxygen again, reverting back to quinones and producing superoxide again, and so on. This is called redox cycling, and it contributes to oxidative stress, which of course puts greater demands on glutathione. So far I've been talking about people in general. But suppose we're talking about a woman, and particularly a woman who is in her potentially reproductive years. This woman is making estrogens in significantly higher amounts than men do--no surprise there! Well, the estrogens have to be disposed of, so how does she do that? There is more than one pathway, but it turns out that the main way she does it is to convert the estrogens to what are called catechol estrogens, using the enzymes CYP1A1 and CYP1B1. Normally the catechol estrogens are then dealt with using good old COMT, which inactivates them, and they are eventually excreted. But what if this woman has a SNP in her CYP1B1 that raises the activity of this enzyme, and what if, in addition, she has a SNP in her COMT that slows it down? Well, then more of her estrogens go into making catechol estrogens, and more of them are converted into semiquinones, which then react with oxygen to make quinones and superoxide ions. Well, you know the story from there on--what if she also has SNPs in her glutathione transferase enzymes? This is a recipe for more oxidative stress and more demands on glutathione. O.K., now what if she is a woman in her potentially reproductive years, and she has these SNPs, and she is under a lot of emotional stress? Get the picture? A major overload on glutathione. Now if she also has a set of SNPs that make her methylation cycle vulnerable to developing a block when under oxidative stress, guess what happens to her--CFS! Is this scenario far-fetched? No, it isn't. I have the data on several women who fit this picture, and you know who you are! O.K., so what about the men? Well, they certainly produce epinephrine, but they won't have a big competition from estrogens when they try to get rid of it. So their capacity to handle stress is probably going to be greater, on the average. We're just talking about biochemistry here, not how macho somebody might be or how tough or what kind of guts or character they might have. It's just inescapable biochemistry. So the men are right, and the women are right, too. So why do women get CFS at higher rates than men do? There are more demands on their glutathione, because of their higher production of estrogens. O.K., what about the " female advantage " in autism, and how does that square with what I've said above? Well, Jill was talking about little girls, and I'm talking about BIG girls, er... WOMEN! I think this is a nonlinear situation. A little bit of estrogen probably helps, because it boosts glutathione production. But a lot of estrogen, especially if combined with competition from stress- induced epinephrine, turns into a " female disadvantage, " because the greater oxidative stress overwhelms the increase in glutathione production. Well, I'll probably get some stunning e-mails in response to this, but that's what I've come up with today. Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Dear Rich. At the onset of my illness, at age 35, I was not under emotional stress. I was happy with my life, swimming, dancing, working, active in my community, culturally and Spiritually. I got a virulent virus that would not go away and my Immune System and brain have never been the same since. The virus and/or immune response waxed and waned for several months. The acute stage quieted down but the immune response and sore throats, continued to wax and wane for several years. By using every healing modality I was familiar with, I managed to keep going, and progressing in the above areas of my life. As a matter of fact, I was quite aware of 2 parallel tracks ocurring. Healing...due to all I was doing for health, Spiritually, the rest of life..yet " something " that felt like an active disease at the cellular/immune level. Sometimes I thought it must be a rare disease, and other times...that I was not excercising, eating, sleeping, thinking correctly or whatever. I would either ignore it or take action in any of those areas. After 4 or 5 years, and the healing work making my life even more satisfying and promising than before...I again deteriorated in brain, pain, and energy and immune function. In preparing for continuing education, and becasue of what I was experiencing, I tested to see if I had learning disabilites and they said yes. I had acquired Dyselexia seemingly from nowhere! (BTW, I used to read 5 books at a time, but now could not get through one, or even remember that I was reading one...I would find them around the house later..dozens now) During this time, I turned down a job I really wanted, I could barely find my way home, (or have the strength to keep my foot on the brake at a stop sign), I totalled my employer's car, I started a fire in my house that I could not remember how to put out. I again had acute un=resolving infections and could not tolerate sensory input, even people talking. I had seen several doctors who could find " nothing abnormal indicated " , would not order an MRI, and finally suggested take antidepressants and seeing a shrink. What I was reporting to my family long distance and my friends was so freaky and out of the realm of anything they'd ever heard of, they were extremely alienated from the entire situation. After not being able work it into any physical, emotional or mental framework they possessed, they all detached and continued to theorize among themselves. No one around me, and no relative known to me, living or dead had anything like this simultaneous nightmarish set of circumstances ever happening. (Later I discovered the identical thing WAS ocurring around my community, state and indeed, to tens of thousands across the country.) It was not until I went to a CFS Specialist that I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome. A heavy dose of Acyclovir broke the daily sore throat pattern,but nothing else. I was bedridden usually for 20 hours a day, in excruciating nerve, muscle, joint pain, a mudslide for a brain, in a dark quiet room for the next 4 or 5 years. With Gamma Globulin and B-12, I would sometimes have 4 hour window when I felt almost " normal " . That is how I managed to have any life...in those 4 hour increments, which I made very good use of. Stopping my personal account here...I ran a CFIDS Support Group for 10 years...the 90s. I attended the AACFS International Research Conference in 1996. It was preceded by a Support Group Leader Conference. In my own group, and verified by the others, we could identify no emotional component to the onset of this disease. Tho, other than Researchers and Physicians who specialized in CFIDS, virtually the entire human race...friends, family, comedians, the Media, psychologists, Neurologists, New Age practioners, INSISTED this must be the case. Of course there were the endless parade of multi market sales people who had THE product(s) that would make us well (or THE Spiritual practice or THE energy work, or whatever). If we did not get well or purchase them in the first place we " must not really want to get well " . The above is virtually identical experience among, now hundreds of thousands of patients around this country. (the Planet actually...millions). Including normal happy teenagers and children. Meaning...the terrifying, painful and multisystemic illness with severe cognitive impairment, within a society demanding that we get up and get back to life. Otherwise, we must be doing something wrong. The difference I have personally observed between men and women is this: The men I have known tend more to be relentlessly in pusuit of or positive that they have found The Cause, The Fix..The Cure. ANything short of that is completly unacceptable, and the crashes full of despair and defeatism. Tho I am not unfamilar with the despair and defeatism of a crash after improvement. Of my 5 friends in my community who committed suicide, 3 were men and 2 were women. Others can comment more on the Science you have postulated. But I cannot verify that more women than men were under emotional stress at the onset of CFIDS from what I have seen, heard, or read. There may be other factors involved in that observation... women do generally acknowledge emotions more than men...are living a more (acknowledged) emotional life. I think there are statistics that say prime of life women's lives are more stressful than men's, and not just from an internal interpretation. (We're talking different decades of onset now also...more cultural and environmental factors at play) In the early research, it was sometimes said that stress the year before could have made one more susceptible to the " hit " , assumed to be a virus. But that was usually not said as " emotional " , per se...but any major stress to body...car accident, surgery, major illness, chemical exposure, vaccines, blood transfusion, excessive work, OR major life changes. I do not recall this being gender specific, and there was still thought to be an " it " that was out of the norm or familar to the Medical Profession. Women do have a more complex system and hormonal differences. I think this is related to why they have higher numbers of Autoimmune disease? It was also thought that there might be asymptomatic " carriers " . Since you are studying Fukuda CFS and have expressed belief in the emotional component...it may be that women under emotional stress would be more likely to consult with you on their cases. CFS Specialists have said these patients (the disease) " start out complicated and get more complicated. " There are endless opportunistic or re-activated infections, and damage to CNS, organs, etc. Because the CDC did not appropriately respond to the epidemic, (what was originally meant in the US as CFS, and ME elsewhere)...or fund research, test patients, and we have become so much *more* complicated...I do wonder if we will ever know what actually caused onset in the first place. Even for new cases, there is not usually informed evaluation or testing available, even for known suspects. On the other hand, because of the very fact that there are so many systems and issues involved, and becasue of so many advances in the medical field, and communication by internet, I think there are many areas, theories, treatment modalities that can and will help us...both in actual healing/restoration and management/quality of life and function. By the way, in this day and age, I cannot imagine that there are very many women or men who are not under " emotional " and every other kind of stress! including environmentally induced. Antidepressants, anti-anxiety, and sleeping pills are up many-fold thoughout society. Kudos on the time that you took to research this...and maybe something can by gleaned for a subset of CFS, or even *aspects* for the rest of us. Have you seen anything related in CFS Biomedical Science, or explanations for higher number of cases among women? TC, Katrina > > Hi, all. > > Well, I was in the medical library most of the day, today, doing a > lot of reading and thinking. I think a few more pieces of the > puzzle have come together, and I would like to tell you about it. > > By way of introduction, there have been several things rattling > around in my head lately: > > First, long-time readers will know that historically on the lists I > have been beaten up fairly soundly at times for suggesting that > emotional stress could be a contributor to the onset of CFS in some > cases. I think that for the most part it has been men on the lists > who have done most of the beating. On the other hand, I have been > told by quite a few others (I think mostly women) that emotional > stress was a major contributor to the onset of their illness. It > was tempting to suspect that the men were just being macho, but what > about taking the revolutionary point of view that (a) they know what > they're talking about, and ( they just might happen to be telling > the truth? Could it be that things are different for men and women? > > Second, I've been trying to figure out if I have a strong enough > case to send an abstract to the IACFS hypothesizing that I can > explain the reason for the much higher prevalence of CFS in women > than in men. > > Third, has written me a couple of times asking what I have to > say about Jill 's second talk at the April DAN! conference in > which she described the " female advantage " in autism, which involves > estrogen stimulation of the methylation cycle and glutathione > production. > > Well, now I think I have an answer for all of those things. Here's > the story: > > When people are under stress, their sympathoadrenomedullary system > puts out epinephrine (adrenaline). Epinephrine is a catecholamine. > Normally it is detoxed (metabolized) by COMT (catechol-O-methyl > transferase), which takes a methyl group from SAMe and attaches it > to the epinephrine molecule. This de-activates it, and it is > eventually excreted. If they have a SNP in their COMT that causes > it to be less active, then the epinephrine will build up to higher > concentrations and stay around longer, which will allow more of it > to react with oxygen and form a semiquinone. The semiquinone can > react with oxygen to form a quinone and a superoxide free radical. > Normally, quinones are conjugated by glutathione with the help of > glutathione transferase enzymes, and then they are excreted from the > body. However, if the person has SNPs in the glutathione peroxidase > enzymes, then the quinones can hang around longer. There are > enzymes that convert quinones back to semiquinones, and then the > semiquinones can react with oxygen again, reverting back to quinones > and producing superoxide again, and so on. This is called redox > cycling, and it contributes to oxidative stress, which of course > puts greater demands on glutathione. > > So far I've been talking about people in general. But suppose we're > talking about a woman, and particularly a woman who is in her > potentially reproductive years. This woman is making estrogens in > significantly higher amounts than men do--no surprise there! Well, > the estrogens have to be disposed of, so how does she do that? > There is more than one pathway, but it turns out that the main way > she does it is to convert the estrogens to what are called catechol > estrogens, using the enzymes CYP1A1 and CYP1B1. Normally the > catechol estrogens are then dealt with using good old COMT, which > inactivates them, and they are eventually excreted. But what if > this woman has a SNP in her CYP1B1 that raises the activity of this > enzyme, and what if, in addition, she has a SNP in her COMT that > slows it down? Well, then more of her estrogens go into making > catechol estrogens, and more of them are converted into > semiquinones, which then react with oxygen to make quinones and > superoxide ions. Well, you know the story from there on--what if > she also has SNPs in her glutathione transferase enzymes? This is a > recipe for more oxidative stress and more demands on glutathione. > > O.K., now what if she is a woman in her potentially reproductive > years, and she has these SNPs, and she is under a lot of emotional > stress? Get the picture? A major overload on glutathione. Now if > she also has a set of SNPs that make her methylation cycle > vulnerable to developing a block when under oxidative stress, guess > what happens to her--CFS! Is this scenario far-fetched? No, it > isn't. I have the data on several women who fit this picture, and > you know who you are! > > O.K., so what about the men? Well, they certainly produce > epinephrine, but they won't have a big competition from estrogens > when they try to get rid of it. So their capacity to handle stress > is probably going to be greater, on the average. We're just talking > about biochemistry here, not how macho somebody might be or how > tough or what kind of guts or character they might have. It's just > inescapable biochemistry. So the men are right, and the women are > right, too. > > So why do women get CFS at higher rates than men do? There are more > demands on their glutathione, because of their higher production of > estrogens. > > O.K., what about the " female advantage " in autism, and how does that > square with what I've said above? Well, Jill was talking > about little girls, and I'm talking about BIG girls, er... WOMEN! I > think this is a nonlinear situation. A little bit of estrogen > probably helps, because it boosts glutathione production. But a lot > of estrogen, especially if combined with competition from stress- > induced epinephrine, turns into a " female disadvantage, " because the > greater oxidative stress overwhelms the increase in glutathione > production. > > Well, I'll probably get some stunning e-mails in response to this, > but that's what I've come up with today. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Hi Rich, What a wonderful mind you have! We are so lucky that you would spend your time in the library looking up things that will help us. My first thought is that if the estrogen/stress equation was a big one for CFS, we would see a lot of CFS in women who have undergone IVF treatment. During IVF drugs are used to stimulate the reproductive system and very high levels of estrogen are reached. IVF is very stressful and most cycles do not result in a pregnancy. There is a lot of disapointment/heartbreak. Just a random idea. With kindest regards, Annette ___________________________________________________________ Photos – NEW, now offering a quality print service from just 8p a photo http://uk.photos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 If men were better able to handle stress, they would be assigned the baby-making task. I think you've got the cart before the horse. I think woman, because the are generally able to handle stress better- and the culture collectively knows that and expects them to carry a bigger load-do so. They take on much bigger loads and so get sick more. But lets not forget; women live longer anyhow. Do those specific women you refer to have kids? You know, I think the most sympathetic of men have a deficient idea of what it is like to be the primary caregiver of kids-unless, maybe they are one? A ----- Original Message ----- From: rvankonynen Hi, all. Well, I was in the medical library most of the day, today, doing a lot of reading and thinking. I think a few more pieces of the puzzle have come together, and I would like to tell you about it. By way of introduction, there have been several things rattling around in my head lately: First, long-time readers will know that historically on the lists I have been beaten up fairly soundly at times for suggesting that emotional stress could be a contributor to the onset of CFS in some cases. I think that for the most part it has been men on the lists who have done most of the beating. On the other hand, I have been told by quite a few others (I think mostly women) that emotional stress was a major contributor to the onset of their illness. It was tempting to suspect that the men were just being macho, but what about taking the revolutionary point of view that (a) they know what they're talking about, and ( they just might happen to be telling the truth? Could it be that things are different for men and women? Second, I've been trying to figure out if I have a strong enough case to send an abstract to the IACFS hypothesizing that I can explain the reason for the much higher prevalence of CFS in women than in men. Third, has written me a couple of times asking what I have to say about Jill 's second talk at the April DAN! conference in which she described the " female advantage " in autism, which involves estrogen stimulation of the methylation cycle and glutathione production. Well, now I think I have an answer for all of those things. Here's the story: When people are under stress, their sympathoadrenomedullary system puts out epinephrine (adrenaline). Epinephrine is a catecholamine. Normally it is detoxed (metabolized) by COMT (catechol-O-methyl transferase), which takes a methyl group from SAMe and attaches it to the epinephrine molecule. This de-activates it, and it is eventually excreted. If they have a SNP in their COMT that causes it to be less active, then the epinephrine will build up to higher concentrations and stay around longer, which will allow more of it to react with oxygen and form a semiquinone. The semiquinone can react with oxygen to form a quinone and a superoxide free radical. Normally, quinones are conjugated by glutathione with the help of glutathione transferase enzymes, and then they are excreted from the body. However, if the person has SNPs in the glutathione peroxidase enzymes, then the quinones can hang around longer. There are enzymes that convert quinones back to semiquinones, and then the semiquinones can react with oxygen again, reverting back to quinones and producing superoxide again, and so on. This is called redox cycling, and it contributes to oxidative stress, which of course puts greater demands on glutathione. So far I've been talking about people in general. But suppose we're talking about a woman, and particularly a woman who is in her potentially reproductive years. This woman is making estrogens in significantly higher amounts than men do--no surprise there! Well, the estrogens have to be disposed of, so how does she do that? There is more than one pathway, but it turns out that the main way she does it is to convert the estrogens to what are called catechol estrogens, using the enzymes CYP1A1 and CYP1B1. Normally the catechol estrogens are then dealt with using good old COMT, which inactivates them, and they are eventually excreted. But what if this woman has a SNP in her CYP1B1 that raises the activity of this enzyme, and what if, in addition, she has a SNP in her COMT that slows it down? Well, then more of her estrogens go into making catechol estrogens, and more of them are converted into semiquinones, which then react with oxygen to make quinones and superoxide ions. Well, you know the story from there on--what if she also has SNPs in her glutathione transferase enzymes? This is a recipe for more oxidative stress and more demands on glutathione. O.K., now what if she is a woman in her potentially reproductive years, and she has these SNPs, and she is under a lot of emotional stress? Get the picture? A major overload on glutathione. Now if she also has a set of SNPs that make her methylation cycle vulnerable to developing a block when under oxidative stress, guess what happens to her--CFS! Is this scenario far-fetched? No, it isn't. I have the data on several women who fit this picture, and you know who you are! O.K., so what about the men? Well, they certainly produce epinephrine, but they won't have a big competition from estrogens when they try to get rid of it. So their capacity to handle stress is probably going to be greater, on the average. We're just talking about biochemistry here, not how macho somebody might be or how tough or what kind of guts or character they might have. It's just inescapable biochemistry. So the men are right, and the women are right, too. So why do women get CFS at higher rates than men do? There are more demands on their glutathione, because of their higher production of estrogens. O.K., what about the " female advantage " in autism, and how does that square with what I've said above? Well, Jill was talking about little girls, and I'm talking about BIG girls, er... WOMEN! I think this is a nonlinear situation. A little bit of estrogen probably helps, because it boosts glutathione production. But a lot of estrogen, especially if combined with competition from stress- induced epinephrine, turns into a " female disadvantage, " because the greater oxidative stress overwhelms the increase in glutathione production. Well, I'll probably get some stunning e-mails in response to this, but that's what I've come up with today. Rich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 ' Rich, why do we call it the female advantage in autism? I think we should be calling it the male disadvantage (we don't call low rates of breast cancer in men the male advantage). I just don't feel Jill is on the right track here at least not as a total answer. Perhaps there are ways in which testosterone models the brain that make men more vulnerable. There is a guy in England, I think his last name is Baron, who has pursued this line of work, looking at the normal male brain and then at autism as an extension of that. Not that he's 'right' either but I think the first place you should look for risk factors in a vulnerable population is within that population. I'm sorry people beat you up about stress. That's really silly. Its obvious stress can make you sick, and its equally obvious than being sick can be horribly stressful. Why should it be a choice? There are many contributing factors to wellness and illness. For instance, the ACE deletion means one handles stress more poorly, period. > > Hi, all. > > Well, I was in the medical library most of the day, today, doing a > lot of reading and thinking. I think a few more pieces of the > puzzle have come together, and I would like to tell you about it. > > By way of introduction, there have been several things rattling > around in my head lately: > > First, long-time readers will know that historically on the lists I > have been beaten up fairly soundly at times for suggesting that > emotional stress could be a contributor to the onset of CFS in some > cases. I think that for the most part it has been men on the lists > who have done most of the beating. On the other hand, I have been > told by quite a few others (I think mostly women) that emotional > stress was a major contributor to the onset of their illness. It > was tempting to suspect that the men were just being macho, but what > about taking the revolutionary point of view that (a) they know what > they're talking about, and ( they just might happen to be telling > the truth? Could it be that things are different for men and women? > > Second, I've been trying to figure out if I have a strong enough > case to send an abstract to the IACFS hypothesizing that I can > explain the reason for the much higher prevalence of CFS in women > than in men. > > Third, has written me a couple of times asking what I have to > say about Jill 's second talk at the April DAN! conference in > which she described the " female advantage " in autism, which involves > estrogen stimulation of the methylation cycle and glutathione > production. > > Well, now I think I have an answer for all of those things. Here's > the story: > > When people are under stress, their sympathoadrenomedullary system > puts out epinephrine (adrenaline). Epinephrine is a catecholamine. > Normally it is detoxed (metabolized) by COMT (catechol-O-methyl > transferase), which takes a methyl group from SAMe and attaches it > to the epinephrine molecule. This de-activates it, and it is > eventually excreted. If they have a SNP in their COMT that causes > it to be less active, then the epinephrine will build up to higher > concentrations and stay around longer, which will allow more of it > to react with oxygen and form a semiquinone. The semiquinone can > react with oxygen to form a quinone and a superoxide free radical. > Normally, quinones are conjugated by glutathione with the help of > glutathione transferase enzymes, and then they are excreted from the > body. However, if the person has SNPs in the glutathione peroxidase > enzymes, then the quinones can hang around longer. There are > enzymes that convert quinones back to semiquinones, and then the > semiquinones can react with oxygen again, reverting back to quinones > and producing superoxide again, and so on. This is called redox > cycling, and it contributes to oxidative stress, which of course > puts greater demands on glutathione. > > So far I've been talking about people in general. But suppose we're > talking about a woman, and particularly a woman who is in her > potentially reproductive years. This woman is making estrogens in > significantly higher amounts than men do--no surprise there! Well, > the estrogens have to be disposed of, so how does she do that? > There is more than one pathway, but it turns out that the main way > she does it is to convert the estrogens to what are called catechol > estrogens, using the enzymes CYP1A1 and CYP1B1. Normally the > catechol estrogens are then dealt with using good old COMT, which > inactivates them, and they are eventually excreted. But what if > this woman has a SNP in her CYP1B1 that raises the activity of this > enzyme, and what if, in addition, she has a SNP in her COMT that > slows it down? Well, then more of her estrogens go into making > catechol estrogens, and more of them are converted into > semiquinones, which then react with oxygen to make quinones and > superoxide ions. Well, you know the story from there on--what if > she also has SNPs in her glutathione transferase enzymes? This is a > recipe for more oxidative stress and more demands on glutathione. > > O.K., now what if she is a woman in her potentially reproductive > years, and she has these SNPs, and she is under a lot of emotional > stress? Get the picture? A major overload on glutathione. Now if > she also has a set of SNPs that make her methylation cycle > vulnerable to developing a block when under oxidative stress, guess > what happens to her--CFS! Is this scenario far-fetched? No, it > isn't. I have the data on several women who fit this picture, and > you know who you are! > > O.K., so what about the men? Well, they certainly produce > epinephrine, but they won't have a big competition from estrogens > when they try to get rid of it. So their capacity to handle stress > is probably going to be greater, on the average. We're just talking > about biochemistry here, not how macho somebody might be or how > tough or what kind of guts or character they might have. It's just > inescapable biochemistry. So the men are right, and the women are > right, too. > > So why do women get CFS at higher rates than men do? There are more > demands on their glutathione, because of their higher production of > estrogens. > > O.K., what about the " female advantage " in autism, and how does that > square with what I've said above? Well, Jill was talking > about little girls, and I'm talking about BIG girls, er... WOMEN! I > think this is a nonlinear situation. A little bit of estrogen > probably helps, because it boosts glutathione production. But a lot > of estrogen, especially if combined with competition from stress- > induced epinephrine, turns into a " female disadvantage, " because the > greater oxidative stress overwhelms the increase in glutathione > production. > > Well, I'll probably get some stunning e-mails in response to this, > but that's what I've come up with today. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Don't forget that women have higher rates of all kinds of autoimmune illnesses. There are many reasons. One can be pregnancy, and having a baby with a different HLA subtype--those HLA subtypes stay in the women's body in perpetuity. The choreography of monthly menstrual cycles is so complex that it can go 'wrong' in many ways. The immune and endocrine and nervous systems are all one big interlocking system. And microbes respond to hormones and some microbes deconjugate hormones and use them. Its very complex. > > Ok, so there's a couple of things here which ring bells for me, but I'm going to need to sit down and draw pictures to make sense of the scientific language. This time of day it's all gobbly gook to me (well, yes any time of day, but more so just now!). So back to the bells and stress and oestrogen. The stress bit fits for me - long term, then shortly after CFS/MCS was diagnosed, my son died. The doc said to me, " well that's it, no sense treating you, you'll never get better. " Well hey thanks. Fortunately, I'm an optimist - but here I am ten years later still sick. > Now the next bit, the oestrogen bit. I always had hormone inbalances, including not enough oestrogen. How does that fit with your hypothesis? Now I'm taking extra oestrogen (post menopause) and relapsed. You got me thinking, that's for sure but I'd like to hear what others have to say, and I want to draw my pictures in the morning, when I'm brighter. Thanks for your research efforts. I'm impressed. > > Men, Women and CFS > > > Hi, all. > > Well, I was in the medical library most of the day, today, doing a > lot of reading and thinking. I think a few more pieces of the > puzzle have come together, and I would like to tell you about it. > > By way of introduction, there have been several things rattling > around in my head lately: > > First, long-time readers will know that historically on the lists I > have been beaten up fairly soundly at times for suggesting that > emotional stress could be a contributor to the onset of CFS in some > cases. I think that for the most part it has been men on the lists > who have done most of the beating. On the other hand, I have been > told by quite a few others (I think mostly women) that emotional > stress was a major contributor to the onset of their illness. It > was tempting to suspect that the men were just being macho, but what > about taking the revolutionary point of view that (a) they know what > they're talking about, and ( they just might happen to be telling > the truth? Could it be that things are different for men and women? > > Second, I've been trying to figure out if I have a strong enough > case to send an abstract to the IACFS hypothesizing that I can > explain the reason for the much higher prevalence of CFS in women > than in men. > > Third, has written me a couple of times asking what I have to > say about Jill 's second talk at the April DAN! conference in > which she described the " female advantage " in autism, which involves > estrogen stimulation of the methylation cycle and glutathione > production. > > Well, now I think I have an answer for all of those things. Here's > the story: > > When people are under stress, their sympathoadrenomedullary system > puts out epinephrine (adrenaline). Epinephrine is a catecholamine. > Normally it is detoxed (metabolized) by COMT (catechol-O-methyl > transferase), which takes a methyl group from SAMe and attaches it > to the epinephrine molecule. This de-activates it, and it is > eventually excreted. If they have a SNP in their COMT that causes > it to be less active, then the epinephrine will build up to higher > concentrations and stay around longer, which will allow more of it > to react with oxygen and form a semiquinone. The semiquinone can > react with oxygen to form a quinone and a superoxide free radical. > Normally, quinones are conjugated by glutathione with the help of > glutathione transferase enzymes, and then they are excreted from the > body. However, if the person has SNPs in the glutathione peroxidase > enzymes, then the quinones can hang around longer. There are > enzymes that convert quinones back to semiquinones, and then the > semiquinones can react with oxygen again, reverting back to quinones > and producing superoxide again, and so on. This is called redox > cycling, and it contributes to oxidative stress, which of course > puts greater demands on glutathione. > > So far I've been talking about people in general. But suppose we're > talking about a woman, and particularly a woman who is in her > potentially reproductive years. This woman is making estrogens in > significantly higher amounts than men do--no surprise there! Well, > the estrogens have to be disposed of, so how does she do that? > There is more than one pathway, but it turns out that the main way > she does it is to convert the estrogens to what are called catechol > estrogens, using the enzymes CYP1A1 and CYP1B1. Normally the > catechol estrogens are then dealt with using good old COMT, which > inactivates them, and they are eventually excreted. But what if > this woman has a SNP in her CYP1B1 that raises the activity of this > enzyme, and what if, in addition, she has a SNP in her COMT that > slows it down? Well, then more of her estrogens go into making > catechol estrogens, and more of them are converted into > semiquinones, which then react with oxygen to make quinones and > superoxide ions. Well, you know the story from there on--what if > she also has SNPs in her glutathione transferase enzymes? This is a > recipe for more oxidative stress and more demands on glutathione. > > O.K., now what if she is a woman in her potentially reproductive > years, and she has these SNPs, and she is under a lot of emotional > stress? Get the picture? A major overload on glutathione. Now if > she also has a set of SNPs that make her methylation cycle > vulnerable to developing a block when under oxidative stress, guess > what happens to her--CFS! Is this scenario far-fetched? No, it > isn't. I have the data on several women who fit this picture, and > you know who you are! > > O.K., so what about the men? Well, they certainly produce > epinephrine, but they won't have a big competition from estrogens > when they try to get rid of it. So their capacity to handle stress > is probably going to be greater, on the average. We're just talking > about biochemistry here, not how macho somebody might be or how > tough or what kind of guts or character they might have. It's just > inescapable biochemistry. So the men are right, and the women are > right, too. > > So why do women get CFS at higher rates than men do? There are more > demands on their glutathione, because of their higher production of > estrogens. > > O.K., what about the " female advantage " in autism, and how does that > square with what I've said above? Well, Jill was talking > about little girls, and I'm talking about BIG girls, er... WOMEN! I > think this is a nonlinear situation. A little bit of estrogen > probably helps, because it boosts glutathione production. But a lot > of estrogen, especially if combined with competition from stress- > induced epinephrine, turns into a " female disadvantage, " because the > greater oxidative stress overwhelms the increase in glutathione > production. > > Well, I'll probably get some stunning e-mails in response to this, > but that's what I've come up with today. > > Rich > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 > > Hi, all. > > Well, I was in the medical library most of the day, today, doing a > lot of reading and thinking. I think a few more pieces of the > puzzle have come together, and I would like to tell you about it. > > By way of introduction, there have been several things rattling > around in my head lately: > > First, long-time readers will know that historically on the lists I > have been beaten up fairly soundly at times for suggesting that > emotional stress could be a contributor to the onset of CFS in some > cases. I think that for the most part it has been men on the lists > who have done most of the beating. On the other hand, I have been > told by quite a few others (I think mostly women) that emotional > stress was a major contributor to the onset of their illness. It > was tempting to suspect that the men were just being macho, but what > about taking the revolutionary point of view that (a) they know what > they're talking about, and ( they just might happen to be telling > the truth? Could it be that things are different for men and women? > > Second, I've been trying to figure out if I have a strong enough > case to send an abstract to the IACFS hypothesizing that I can > explain the reason for the much higher prevalence of CFS in women > than in men. > > Third, has written me a couple of times asking what I have to > say about Jill 's second talk at the April DAN! conference in > which she described the " female advantage " in autism, which involves > estrogen stimulation of the methylation cycle and glutathione > production. > > Well, now I think I have an answer for all of those things. Here's > the story: > > When people are under stress, their sympathoadrenomedullary system > puts out epinephrine (adrenaline). Epinephrine is a catecholamine. > Normally it is detoxed (metabolized) by COMT (catechol-O-methyl > transferase), which takes a methyl group from SAMe and attaches it > to the epinephrine molecule. This de-activates it, and it is > eventually excreted. If they have a SNP in their COMT that causes > it to be less active, then the epinephrine will build up to higher > concentrations and stay around longer, which will allow more of it > to react with oxygen and form a semiquinone. The semiquinone can > react with oxygen to form a quinone and a superoxide free radical. > Normally, quinones are conjugated by glutathione with the help of > glutathione transferase enzymes, and then they are excreted from the > body. However, if the person has SNPs in the glutathione peroxidase > enzymes, then the quinones can hang around longer. There are > enzymes that convert quinones back to semiquinones, and then the > semiquinones can react with oxygen again, reverting back to quinones > and producing superoxide again, and so on. This is called redox > cycling, and it contributes to oxidative stress, which of course > puts greater demands on glutathione. > > So far I've been talking about people in general. But suppose we're > talking about a woman, and particularly a woman who is in her > potentially reproductive years. This woman is making estrogens in > significantly higher amounts than men do--no surprise there! Well, > the estrogens have to be disposed of, so how does she do that? > There is more than one pathway, but it turns out that the main way > she does it is to convert the estrogens to what are called catechol > estrogens, using the enzymes CYP1A1 and CYP1B1. Normally the > catechol estrogens are then dealt with using good old COMT, which > inactivates them, and they are eventually excreted. But what if > this woman has a SNP in her CYP1B1 that raises the activity of this > enzyme, and what if, in addition, she has a SNP in her COMT that > slows it down? Well, then more of her estrogens go into making > catechol estrogens, and more of them are converted into > semiquinones, which then react with oxygen to make quinones and > superoxide ions. Well, you know the story from there on--what if > she also has SNPs in her glutathione transferase enzymes? This is a > recipe for more oxidative stress and more demands on glutathione. > > O.K., now what if she is a woman in her potentially reproductive > years, and she has these SNPs, and she is under a lot of emotional > stress? Get the picture? A major overload on glutathione. Now if > she also has a set of SNPs that make her methylation cycle > vulnerable to developing a block when under oxidative stress, guess > what happens to her--CFS! Is this scenario far-fetched? No, it > isn't. I have the data on several women who fit this picture, and > you know who you are! > > O.K., so what about the men? Well, they certainly produce > epinephrine, but they won't have a big competition from estrogens > when they try to get rid of it. So their capacity to handle stress > is probably going to be greater, on the average. We're just talking > about biochemistry here, not how macho somebody might be or how > tough or what kind of guts or character they might have. It's just > inescapable biochemistry. So the men are right, and the women are > right, too. > > So why do women get CFS at higher rates than men do? There are more > demands on their glutathione, because of their higher production of > estrogens. > > O.K., what about the " female advantage " in autism, and how does that > square with what I've said above? Well, Jill was talking > about little girls, and I'm talking about BIG girls, er... WOMEN! I > think this is a nonlinear situation. A little bit of estrogen > probably helps, because it boosts glutathione production. But a lot > of estrogen, especially if combined with competition from stress- > induced epinephrine, turns into a " female disadvantage, " because the > greater oxidative stress overwhelms the increase in glutathione > production. > > Well, I'll probably get some stunning e-mails in response to this, > but that's what I've come up with today. > > Rich > 100% spot on as far as I am concerned. Time very well spent just keep tht knowledge coming please. Thxs Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Hi Diane, Rich - Count me a one male who attributes his onset of CFS to emotional stress. Some very emotionally stressing events preceded my determination that something was going on energy-wise. I have the EBV antibody, along with 90% of the world, but was not aware of being ill at the beginning of my CFS. It took almost a year of feeling tired before I had to admit to myself that it might be physiological, and has been 4 years of going to doctors and saying " what the hell is wrong with me? " , and not one of them has helped even a little bit. Back to gender stereotypes, I would say that it was my male ego which prevented my from admitting that I was tired all the time for so long. Having CFS brings on enough emotional stress to cause CFS! Colin Dianne wrote: > > > > > > Hi, all. > > > > Well, I was in the medical library most of the day, today, doing a > > lot of reading and thinking. I think a few more pieces of the > > puzzle have come together, and I would like to tell you about it. > > > > By way of introduction, there have been several things rattling > > around in my head lately: > > > > First, long-time readers will know that historically on the lists > I > > have been beaten up fairly soundly at times for suggesting that > > emotional stress could be a contributor to the onset of CFS in > some > > cases. I think that for the most part it has been men on the > lists > > who have done most of the beating. On the other hand, I have been > > told by quite a few others (I think mostly women) that emotional > > stress was a major contributor to the onset of their illness. It > > was tempting to suspect that the men were just being macho, but > what > > about taking the revolutionary point of view that (a) they know > what > > they're talking about, and ( they just might happen to be > telling > > the truth? Could it be that things are different for men and women? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Colin Green wrote > Count me a one male who attributes his onset of CFS to emotional stress. Some very emotionally stressing events preceded my determination that something was going on energy-wise. > I have the EBV antibody, along with 90% of the world, but was not aware of being ill at the beginning of my CFS. > > It took almost a year of feeling tired before I had to admit to myself that it might be physiological, and has been 4 years of going to doctors and saying " what the hell is wrong with me? " , and not one of them has helped even a little bit. > Back to gender stereotypes, I would say that it was my male ego which prevented my from admitting that I was tired all the time for so long. > Having CFS brings on enough emotional stress to cause CFS! > Colin Perhaps the illness itself has changed so radically that one could have a slow and progressive detioration with the same immune abnormalities as " sudden onsets " and eventually wind up in the same place. We'll have to let science decide. But the concept of being unaware, able to ignore the illness, and describing it as " tired all the time " is not compatible with our illness which was " beyond fatigue " , " Nothing like tiredness " and so completely devastating that it was the lucky ones could stand up occasionally and feed themselves without help. No amount of stress has been known to result in an illness even remotely like ours in Incline Village. Are you certain that your illness wasn't accompanied by an increased susceptibilty to stress which made it appear causative, just as people were so firmly convinced that stress caused ulcers until it was found that they had it exactly backwards? The heightened inflammatory response to bacterial infection simply decreased their threshold of tolerance until any stress that had a " logical basis " received the blame. And this reversed " cause-effect " concept persisted for over a hundred years without serious opposition although it was completely wrong. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Rich- I think this is really something to pursue. It sure rings true to me. My CFS/FMS was triggered by the birth of my daughter. She was born when I was 43 and I think I threw my body a curve ball so late in its reproductive game that it hasn't recovered since. Add into the equation a C-section, serious nursing troubles at the beginning, and my in- laws living with us at the time (although they were a HUGE help) AND no more than 2 hours of sleep at a time for months - well, I certainly felt stressed. I'm still looking for a way to get myself back in balance. Good luck with your work! You amaze me! Jennie d/x 2/2005 > > Hi, all. > > Well, I was in the medical library most of the day, today, doing a > lot of reading and thinking. I think a few more pieces of the > puzzle have come together, and I would like to tell you about it. > > By way of introduction, there have been several things rattling > around in my head lately: > > First, long-time readers will know that historically on the lists I > have been beaten up fairly soundly at times for suggesting that > emotional stress could be a contributor to the onset of CFS in some > cases. I think that for the most part it has been men on the lists > who have done most of the beating. On the other hand, I have been > told by quite a few others (I think mostly women) that emotional > stress was a major contributor to the onset of their illness. It > was tempting to suspect that the men were just being macho, but what > about taking the revolutionary point of view that (a) they know what > they're talking about, and ( they just might happen to be telling > the truth? Could it be that things are different for men and women? > > Second, I've been trying to figure out if I have a strong enough > case to send an abstract to the IACFS hypothesizing that I can > explain the reason for the much higher prevalence of CFS in women > than in men. > > Third, has written me a couple of times asking what I have to > say about Jill 's second talk at the April DAN! conference in > which she described the " female advantage " in autism, which involves > estrogen stimulation of the methylation cycle and glutathione > production. > > Well, now I think I have an answer for all of those things. Here's > the story: > > When people are under stress, their sympathoadrenomedullary system > puts out epinephrine (adrenaline). Epinephrine is a catecholamine. > Normally it is detoxed (metabolized) by COMT (catechol-O-methyl > transferase), which takes a methyl group from SAMe and attaches it > to the epinephrine molecule. This de-activates it, and it is > eventually excreted. If they have a SNP in their COMT that causes > it to be less active, then the epinephrine will build up to higher > concentrations and stay around longer, which will allow more of it > to react with oxygen and form a semiquinone. The semiquinone can > react with oxygen to form a quinone and a superoxide free radical. > Normally, quinones are conjugated by glutathione with the help of > glutathione transferase enzymes, and then they are excreted from the > body. However, if the person has SNPs in the glutathione peroxidase > enzymes, then the quinones can hang around longer. There are > enzymes that convert quinones back to semiquinones, and then the > semiquinones can react with oxygen again, reverting back to quinones > and producing superoxide again, and so on. This is called redox > cycling, and it contributes to oxidative stress, which of course > puts greater demands on glutathione. > > So far I've been talking about people in general. But suppose we're > talking about a woman, and particularly a woman who is in her > potentially reproductive years. This woman is making estrogens in > significantly higher amounts than men do--no surprise there! Well, > the estrogens have to be disposed of, so how does she do that? > There is more than one pathway, but it turns out that the main way > she does it is to convert the estrogens to what are called catechol > estrogens, using the enzymes CYP1A1 and CYP1B1. Normally the > catechol estrogens are then dealt with using good old COMT, which > inactivates them, and they are eventually excreted. But what if > this woman has a SNP in her CYP1B1 that raises the activity of this > enzyme, and what if, in addition, she has a SNP in her COMT that > slows it down? Well, then more of her estrogens go into making > catechol estrogens, and more of them are converted into > semiquinones, which then react with oxygen to make quinones and > superoxide ions. Well, you know the story from there on--what if > she also has SNPs in her glutathione transferase enzymes? This is a > recipe for more oxidative stress and more demands on glutathione. > > O.K., now what if she is a woman in her potentially reproductive > years, and she has these SNPs, and she is under a lot of emotional > stress? Get the picture? A major overload on glutathione. Now if > she also has a set of SNPs that make her methylation cycle > vulnerable to developing a block when under oxidative stress, guess > what happens to her--CFS! Is this scenario far-fetched? No, it > isn't. I have the data on several women who fit this picture, and > you know who you are! > > O.K., so what about the men? Well, they certainly produce > epinephrine, but they won't have a big competition from estrogens > when they try to get rid of it. So their capacity to handle stress > is probably going to be greater, on the average. We're just talking > about biochemistry here, not how macho somebody might be or how > tough or what kind of guts or character they might have. It's just > inescapable biochemistry. So the men are right, and the women are > right, too. > > So why do women get CFS at higher rates than men do? There are more > demands on their glutathione, because of their higher production of > estrogens. > > O.K., what about the " female advantage " in autism, and how does that > square with what I've said above? Well, Jill was talking > about little girls, and I'm talking about BIG girls, er... WOMEN! I > think this is a nonlinear situation. A little bit of estrogen > probably helps, because it boosts glutathione production. But a lot > of estrogen, especially if combined with competition from stress- > induced epinephrine, turns into a " female disadvantage, " because the > greater oxidative stress overwhelms the increase in glutathione > production. > > Well, I'll probably get some stunning e-mails in response to this, > but that's what I've come up with today. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 [At the onset of my illness, at age 35, I was not under emotional stress. I was happy with my life, swimming, dancing, working, active in my community, culturally and Spiritually. I got a virulent virus that would not go away and my Immune System and brain have never been the same since. Katrina] Yes, this is an important point I missed Katrina. I have had a very stressful life (by anyone's measure) but at the point where I took " the big health dive " my life was definitely in a really happy, productive phase. Work was just right. I'd just graduated from uni after nine years of study, I was super fit, had met my husband to be and was " in lerv " . Everything was just falling into place. Then my employer built a new office. I went in to have a look, and collapsed. And that was it. About six months before that I'd been fighting a strange virus. Nothing would move it. Now this is someone who was fit, healthy, had long been on a strict diet, took supplements, no drugs, not even a cold or headache in many years. And then I got sick. Five lots of antibiotics and still I felt ill and exhausted. " This too will pass " my standard philosophy for such times became my mantra. And althought I eventually felt better, I also felt tired all the time. I thought I was losing fitness - so ran further and went to the gym more often! Then came the the office move, and the rest, well history. I reckon that I have multiple viruses and that they weren't all present at the start. For instance, I was tested for glandular fever back then, negative. Yet tests now show that I have had it sometime since. There have been times when I thought I was getting better (enough to go for 5-10 km walks) then crashed. Now I'm back to that daily window you spoke of, resting most of the day. The garlic (I was advised only to use Kyolic) had that effect on me as well at first, so I adjusted the dose - took it right back and started slowly, gradually increasing my tolerance. I can taste the metal and gunk in my mouth each morning, so there's obviously something happening. I can't tolerate MSM at all. It flattens me, no matter how tiny the dose. Can't tolerate [Of my 5 friends in my community who committed suicide, 3 were men and 2 were women.] Same here in Australia, mostly men mostly 25 + age group. Re: Men, Women and CFS Dear Rich. At the onset of my illness, at age 35, I was not under emotional stress. I was happy with my life, swimming, dancing, working, active in my community, culturally and Spiritually. I got a virulent virus that would not go away and my Immune System and brain have never been the same since. The virus and/or immune response waxed and waned for several months. The acute stage quieted down but the immune response and sore throats, continued to wax and wane for several years. By using every healing modality I was familiar with, I managed to keep going, and progressing in the above areas of my life. As a matter of fact, I was quite aware of 2 parallel tracks ocurring. Healing...due to all I was doing for health, Spiritually, the rest of life..yet " something " that felt like an active disease at the cellular/immune level. Sometimes I thought it must be a rare disease, and other times...that I was not excercising, eating, sleeping, thinking correctly or whatever. I would either ignore it or take action in any of those areas. After 4 or 5 years, and the healing work making my life even more satisfying and promising than before...I again deteriorated in brain, pain, and energy and immune function. In preparing for continuing education, and becasue of what I was experiencing, I tested to see if I had learning disabilites and they said yes. I had acquired Dyselexia seemingly from nowhere! (BTW, I used to read 5 books at a time, but now could not get through one, or even remember that I was reading one...I would find them around the house later..dozens now) During this time, I turned down a job I really wanted, I could barely find my way home, (or have the strength to keep my foot on the brake at a stop sign), I totalled my employer's car, I started a fire in my house that I could not remember how to put out. I again had acute un=resolving infections and could not tolerate sensory input, even people talking. I had seen several doctors who could find " nothing abnormal indicated " , would not order an MRI, and finally suggested take antidepressants and seeing a shrink. What I was reporting to my family long distance and my friends was so freaky and out of the realm of anything they'd ever heard of, they were extremely alienated from the entire situation. After not being able work it into any physical, emotional or mental framework they possessed, they all detached and continued to theorize among themselves. No one around me, and no relative known to me, living or dead had anything like this simultaneous nightmarish set of circumstances ever happening. (Later I discovered the identical thing WAS ocurring around my community, state and indeed, to tens of thousands across the country.) It was not until I went to a CFS Specialist that I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome. A heavy dose of Acyclovir broke the daily sore throat pattern,but nothing else. I was bedridden usually for 20 hours a day, in excruciating nerve, muscle, joint pain, a mudslide for a brain, in a dark quiet room for the next 4 or 5 years. With Gamma Globulin and B-12, I would sometimes have 4 hour window when I felt almost " normal " . That is how I managed to have any life...in those 4 hour increments, which I made very good use of. Stopping my personal account here...I ran a CFIDS Support Group for 10 years...the 90s. I attended the AACFS International Research Conference in 1996. It was preceded by a Support Group Leader Conference. In my own group, and verified by the others, we could identify no emotional component to the onset of this disease. Tho, other than Researchers and Physicians who specialized in CFIDS, virtually the entire human race...friends, family, comedians, the Media, psychologists, Neurologists, New Age practioners, INSISTED this must be the case. Of course there were the endless parade of multi market sales people who had THE product(s) that would make us well (or THE Spiritual practice or THE energy work, or whatever). If we did not get well or purchase them in the first place we " must not really want to get well " . The above is virtually identical experience among, now hundreds of thousands of patients around this country. (the Planet actually...millions). Including normal happy teenagers and children. Meaning...the terrifying, painful and multisystemic illness with severe cognitive impairment, within a society demanding that we get up and get back to life. Otherwise, we must be doing something wrong. The difference I have personally observed between men and women is this: The men I have known tend more to be relentlessly in pusuit of or positive that they have found The Cause, The Fix..The Cure. ANything short of that is completly unacceptable, and the crashes full of despair and defeatism. Tho I am not unfamilar with the despair and defeatism of a crash after improvement. Of my 5 friends in my community who committed suicide, 3 were men and 2 were women. Others can comment more on the Science you have postulated. But I cannot verify that more women than men were under emotional stress at the onset of CFIDS from what I have seen, heard, or read. There may be other factors involved in that observation... women do generally acknowledge emotions more than men...are living a more (acknowledged) emotional life. I think there are statistics that say prime of life women's lives are more stressful than men's, and not just from an internal interpretation. (We're talking different decades of onset now also...more cultural and environmental factors at play) In the early research, it was sometimes said that stress the year before could have made one more susceptible to the " hit " , assumed to be a virus. But that was usually not said as " emotional " , per se...but any major stress to body...car accident, surgery, major illness, chemical exposure, vaccines, blood transfusion, excessive work, OR major life changes. I do not recall this being gender specific, and there was still thought to be an " it " that was out of the norm or familar to the Medical Profession. Women do have a more complex system and hormonal differences. I think this is related to why they have higher numbers of Autoimmune disease? It was also thought that there might be asymptomatic " carriers " . Since you are studying Fukuda CFS and have expressed belief in the emotional component...it may be that women under emotional stress would be more likely to consult with you on their cases. CFS Specialists have said these patients (the disease) " start out complicated and get more complicated. " There are endless opportunistic or re-activated infections, and damage to CNS, organs, etc. Because the CDC did not appropriately respond to the epidemic, (what was originally meant in the US as CFS, and ME elsewhere)...or fund research, test patients, and we have become so much *more* complicated...I do wonder if we will ever know what actually caused onset in the first place. Even for new cases, there is not usually informed evaluation or testing available, even for known suspects. On the other hand, because of the very fact that there are so many systems and issues involved, and becasue of so many advances in the medical field, and communication by internet, I think there are many areas, theories, treatment modalities that can and will help us...both in actual healing/restoration and management/quality of life and function. By the way, in this day and age, I cannot imagine that there are very many women or men who are not under " emotional " and every other kind of stress! including environmentally induced. Antidepressants, anti-anxiety, and sleeping pills are up many-fold thoughout society. Kudos on the time that you took to research this...and maybe something can by gleaned for a subset of CFS, or even *aspects* for the rest of us. Have you seen anything related in CFS Biomedical Science, or explanations for higher number of cases among women? TC, Katrina > > Hi, all. > > Well, I was in the medical library most of the day, today, doing a > lot of reading and thinking. I think a few more pieces of the > puzzle have come together, and I would like to tell you about it. > > By way of introduction, there have been several things rattling > around in my head lately: > > First, long-time readers will know that historically on the lists I > have been beaten up fairly soundly at times for suggesting that > emotional stress could be a contributor to the onset of CFS in some > cases. I think that for the most part it has been men on the lists > who have done most of the beating. On the other hand, I have been > told by quite a few others (I think mostly women) that emotional > stress was a major contributor to the onset of their illness. It > was tempting to suspect that the men were just being macho, but what > about taking the revolutionary point of view that (a) they know what > they're talking about, and ( they just might happen to be telling > the truth? Could it be that things are different for men and women? > > Second, I've been trying to figure out if I have a strong enough > case to send an abstract to the IACFS hypothesizing that I can > explain the reason for the much higher prevalence of CFS in women > than in men. > > Third, has written me a couple of times asking what I have to > say about Jill 's second talk at the April DAN! conference in > which she described the " female advantage " in autism, which involves > estrogen stimulation of the methylation cycle and glutathione > production. > > Well, now I think I have an answer for all of those things. Here's > the story: > > When people are under stress, their sympathoadrenomedullary system > puts out epinephrine (adrenaline). Epinephrine is a catecholamine. > Normally it is detoxed (metabolized) by COMT (catechol-O-methyl > transferase), which takes a methyl group from SAMe and attaches it > to the epinephrine molecule. This de-activates it, and it is > eventually excreted. If they have a SNP in their COMT that causes > it to be less active, then the epinephrine will build up to higher > concentrations and stay around longer, which will allow more of it > to react with oxygen and form a semiquinone. The semiquinone can > react with oxygen to form a quinone and a superoxide free radical. > Normally, quinones are conjugated by glutathione with the help of > glutathione transferase enzymes, and then they are excreted from the > body. However, if the person has SNPs in the glutathione peroxidase > enzymes, then the quinones can hang around longer. There are > enzymes that convert quinones back to semiquinones, and then the > semiquinones can react with oxygen again, reverting back to quinones > and producing superoxide again, and so on. This is called redox > cycling, and it contributes to oxidative stress, which of course > puts greater demands on glutathione. > > So far I've been talking about people in general. But suppose we're > talking about a woman, and particularly a woman who is in her > potentially reproductive years. This woman is making estrogens in > significantly higher amounts than men do--no surprise there! Well, > the estrogens have to be disposed of, so how does she do that? > There is more than one pathway, but it turns out that the main way > she does it is to convert the estrogens to what are called catechol > estrogens, using the enzymes CYP1A1 and CYP1B1. Normally the > catechol estrogens are then dealt with using good old COMT, which > inactivates them, and they are eventually excreted. But what if > this woman has a SNP in her CYP1B1 that raises the activity of this > enzyme, and what if, in addition, she has a SNP in her COMT that > slows it down? Well, then more of her estrogens go into making > catechol estrogens, and more of them are converted into > semiquinones, which then react with oxygen to make quinones and > superoxide ions. Well, you know the story from there on--what if > she also has SNPs in her glutathione transferase enzymes? This is a > recipe for more oxidative stress and more demands on glutathione. > > O.K., now what if she is a woman in her potentially reproductive > years, and she has these SNPs, and she is under a lot of emotional > stress? Get the picture? A major overload on glutathione. Now if > she also has a set of SNPs that make her methylation cycle > vulnerable to developing a block when under oxidative stress, guess > what happens to her--CFS! Is this scenario far-fetched? No, it > isn't. I have the data on several women who fit this picture, and > you know who you are! > > O.K., so what about the men? Well, they certainly produce > epinephrine, but they won't have a big competition from estrogens > when they try to get rid of it. So their capacity to handle stress > is probably going to be greater, on the average. We're just talking > about biochemistry here, not how macho somebody might be or how > tough or what kind of guts or character they might have. It's just > inescapable biochemistry. So the men are right, and the women are > right, too. > > So why do women get CFS at higher rates than men do? There are more > demands on their glutathione, because of their higher production of > estrogens. > > O.K., what about the " female advantage " in autism, and how does that > square with what I've said above? Well, Jill was talking > about little girls, and I'm talking about BIG girls, er... WOMEN! I > think this is a nonlinear situation. A little bit of estrogen > probably helps, because it boosts glutathione production. But a lot > of estrogen, especially if combined with competition from stress- > induced epinephrine, turns into a " female disadvantage, " because the > greater oxidative stress overwhelms the increase in glutathione > production. > > Well, I'll probably get some stunning e-mails in response to this, > but that's what I've come up with today. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Sorry, I forgot, about the nickel. Stainless steel cookware was what the doc suggested I avoid. There's a way of testing to see if there's nickel in it, with a magnet, but I can't remember how it goes. I have problems with plastic too, so I've got a second hand kettle. Re: Men, Women and CFS Dear Rich. At the onset of my illness, at age 35, I was not under emotional stress. I was happy with my life, swimming, dancing, working, active in my community, culturally and Spiritually. I got a virulent virus that would not go away and my Immune System and brain have never been the same since. The virus and/or immune response waxed and waned for several months. The acute stage quieted down but the immune response and sore throats, continued to wax and wane for several years. By using every healing modality I was familiar with, I managed to keep going, and progressing in the above areas of my life. As a matter of fact, I was quite aware of 2 parallel tracks ocurring. Healing...due to all I was doing for health, Spiritually, the rest of life..yet " something " that felt like an active disease at the cellular/immune level. Sometimes I thought it must be a rare disease, and other times...that I was not excercising, eating, sleeping, thinking correctly or whatever. I would either ignore it or take action in any of those areas. After 4 or 5 years, and the healing work making my life even more satisfying and promising than before...I again deteriorated in brain, pain, and energy and immune function. In preparing for continuing education, and becasue of what I was experiencing, I tested to see if I had learning disabilites and they said yes. I had acquired Dyselexia seemingly from nowhere! (BTW, I used to read 5 books at a time, but now could not get through one, or even remember that I was reading one...I would find them around the house later..dozens now) During this time, I turned down a job I really wanted, I could barely find my way home, (or have the strength to keep my foot on the brake at a stop sign), I totalled my employer's car, I started a fire in my house that I could not remember how to put out. I again had acute un=resolving infections and could not tolerate sensory input, even people talking. I had seen several doctors who could find " nothing abnormal indicated " , would not order an MRI, and finally suggested take antidepressants and seeing a shrink. What I was reporting to my family long distance and my friends was so freaky and out of the realm of anything they'd ever heard of, they were extremely alienated from the entire situation. After not being able work it into any physical, emotional or mental framework they possessed, they all detached and continued to theorize among themselves. No one around me, and no relative known to me, living or dead had anything like this simultaneous nightmarish set of circumstances ever happening. (Later I discovered the identical thing WAS ocurring around my community, state and indeed, to tens of thousands across the country.) It was not until I went to a CFS Specialist that I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome. A heavy dose of Acyclovir broke the daily sore throat pattern,but nothing else. I was bedridden usually for 20 hours a day, in excruciating nerve, muscle, joint pain, a mudslide for a brain, in a dark quiet room for the next 4 or 5 years. With Gamma Globulin and B-12, I would sometimes have 4 hour window when I felt almost " normal " . That is how I managed to have any life...in those 4 hour increments, which I made very good use of. Stopping my personal account here...I ran a CFIDS Support Group for 10 years...the 90s. I attended the AACFS International Research Conference in 1996. It was preceded by a Support Group Leader Conference. In my own group, and verified by the others, we could identify no emotional component to the onset of this disease. Tho, other than Researchers and Physicians who specialized in CFIDS, virtually the entire human race...friends, family, comedians, the Media, psychologists, Neurologists, New Age practioners, INSISTED this must be the case. Of course there were the endless parade of multi market sales people who had THE product(s) that would make us well (or THE Spiritual practice or THE energy work, or whatever). If we did not get well or purchase them in the first place we " must not really want to get well " . The above is virtually identical experience among, now hundreds of thousands of patients around this country. (the Planet actually...millions). Including normal happy teenagers and children. Meaning...the terrifying, painful and multisystemic illness with severe cognitive impairment, within a society demanding that we get up and get back to life. Otherwise, we must be doing something wrong. The difference I have personally observed between men and women is this: The men I have known tend more to be relentlessly in pusuit of or positive that they have found The Cause, The Fix..The Cure. ANything short of that is completly unacceptable, and the crashes full of despair and defeatism. Tho I am not unfamilar with the despair and defeatism of a crash after improvement. Of my 5 friends in my community who committed suicide, 3 were men and 2 were women. Others can comment more on the Science you have postulated. But I cannot verify that more women than men were under emotional stress at the onset of CFIDS from what I have seen, heard, or read. There may be other factors involved in that observation... women do generally acknowledge emotions more than men...are living a more (acknowledged) emotional life. I think there are statistics that say prime of life women's lives are more stressful than men's, and not just from an internal interpretation. (We're talking different decades of onset now also...more cultural and environmental factors at play) In the early research, it was sometimes said that stress the year before could have made one more susceptible to the " hit " , assumed to be a virus. But that was usually not said as " emotional " , per se...but any major stress to body...car accident, surgery, major illness, chemical exposure, vaccines, blood transfusion, excessive work, OR major life changes. I do not recall this being gender specific, and there was still thought to be an " it " that was out of the norm or familar to the Medical Profession. Women do have a more complex system and hormonal differences. I think this is related to why they have higher numbers of Autoimmune disease? It was also thought that there might be asymptomatic " carriers " . Since you are studying Fukuda CFS and have expressed belief in the emotional component...it may be that women under emotional stress would be more likely to consult with you on their cases. CFS Specialists have said these patients (the disease) " start out complicated and get more complicated. " There are endless opportunistic or re-activated infections, and damage to CNS, organs, etc. Because the CDC did not appropriately respond to the epidemic, (what was originally meant in the US as CFS, and ME elsewhere)...or fund research, test patients, and we have become so much *more* complicated...I do wonder if we will ever know what actually caused onset in the first place. Even for new cases, there is not usually informed evaluation or testing available, even for known suspects. On the other hand, because of the very fact that there are so many systems and issues involved, and becasue of so many advances in the medical field, and communication by internet, I think there are many areas, theories, treatment modalities that can and will help us...both in actual healing/restoration and management/quality of life and function. By the way, in this day and age, I cannot imagine that there are very many women or men who are not under " emotional " and every other kind of stress! including environmentally induced. Antidepressants, anti-anxiety, and sleeping pills are up many-fold thoughout society. Kudos on the time that you took to research this...and maybe something can by gleaned for a subset of CFS, or even *aspects* for the rest of us. Have you seen anything related in CFS Biomedical Science, or explanations for higher number of cases among women? TC, Katrina > > Hi, all. > > Well, I was in the medical library most of the day, today, doing a > lot of reading and thinking. I think a few more pieces of the > puzzle have come together, and I would like to tell you about it. > > By way of introduction, there have been several things rattling > around in my head lately: > > First, long-time readers will know that historically on the lists I > have been beaten up fairly soundly at times for suggesting that > emotional stress could be a contributor to the onset of CFS in some > cases. I think that for the most part it has been men on the lists > who have done most of the beating. On the other hand, I have been > told by quite a few others (I think mostly women) that emotional > stress was a major contributor to the onset of their illness. It > was tempting to suspect that the men were just being macho, but what > about taking the revolutionary point of view that (a) they know what > they're talking about, and ( they just might happen to be telling > the truth? Could it be that things are different for men and women? > > Second, I've been trying to figure out if I have a strong enough > case to send an abstract to the IACFS hypothesizing that I can > explain the reason for the much higher prevalence of CFS in women > than in men. > > Third, has written me a couple of times asking what I have to > say about Jill 's second talk at the April DAN! conference in > which she described the " female advantage " in autism, which involves > estrogen stimulation of the methylation cycle and glutathione > production. > > Well, now I think I have an answer for all of those things. Here's > the story: > > When people are under stress, their sympathoadrenomedullary system > puts out epinephrine (adrenaline). Epinephrine is a catecholamine. > Normally it is detoxed (metabolized) by COMT (catechol-O-methyl > transferase), which takes a methyl group from SAMe and attaches it > to the epinephrine molecule. This de-activates it, and it is > eventually excreted. If they have a SNP in their COMT that causes > it to be less active, then the epinephrine will build up to higher > concentrations and stay around longer, which will allow more of it > to react with oxygen and form a semiquinone. The semiquinone can > react with oxygen to form a quinone and a superoxide free radical. > Normally, quinones are conjugated by glutathione with the help of > glutathione transferase enzymes, and then they are excreted from the > body. However, if the person has SNPs in the glutathione peroxidase > enzymes, then the quinones can hang around longer. There are > enzymes that convert quinones back to semiquinones, and then the > semiquinones can react with oxygen again, reverting back to quinones > and producing superoxide again, and so on. This is called redox > cycling, and it contributes to oxidative stress, which of course > puts greater demands on glutathione. > > So far I've been talking about people in general. But suppose we're > talking about a woman, and particularly a woman who is in her > potentially reproductive years. This woman is making estrogens in > significantly higher amounts than men do--no surprise there! Well, > the estrogens have to be disposed of, so how does she do that? > There is more than one pathway, but it turns out that the main way > she does it is to convert the estrogens to what are called catechol > estrogens, using the enzymes CYP1A1 and CYP1B1. Normally the > catechol estrogens are then dealt with using good old COMT, which > inactivates them, and they are eventually excreted. But what if > this woman has a SNP in her CYP1B1 that raises the activity of this > enzyme, and what if, in addition, she has a SNP in her COMT that > slows it down? Well, then more of her estrogens go into making > catechol estrogens, and more of them are converted into > semiquinones, which then react with oxygen to make quinones and > superoxide ions. Well, you know the story from there on--what if > she also has SNPs in her glutathione transferase enzymes? This is a > recipe for more oxidative stress and more demands on glutathione. > > O.K., now what if she is a woman in her potentially reproductive > years, and she has these SNPs, and she is under a lot of emotional > stress? Get the picture? A major overload on glutathione. Now if > she also has a set of SNPs that make her methylation cycle > vulnerable to developing a block when under oxidative stress, guess > what happens to her--CFS! Is this scenario far-fetched? No, it > isn't. I have the data on several women who fit this picture, and > you know who you are! > > O.K., so what about the men? Well, they certainly produce > epinephrine, but they won't have a big competition from estrogens > when they try to get rid of it. So their capacity to handle stress > is probably going to be greater, on the average. We're just talking > about biochemistry here, not how macho somebody might be or how > tough or what kind of guts or character they might have. It's just > inescapable biochemistry. So the men are right, and the women are > right, too. > > So why do women get CFS at higher rates than men do? There are more > demands on their glutathione, because of their higher production of > estrogens. > > O.K., what about the " female advantage " in autism, and how does that > square with what I've said above? Well, Jill was talking > about little girls, and I'm talking about BIG girls, er... WOMEN! I > think this is a nonlinear situation. A little bit of estrogen > probably helps, because it boosts glutathione production. But a lot > of estrogen, especially if combined with competition from stress- > induced epinephrine, turns into a " female disadvantage, " because the > greater oxidative stress overwhelms the increase in glutathione > production. > > Well, I'll probably get some stunning e-mails in response to this, > but that's what I've come up with today. > > Rich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Colin-this is interesting because I recall having post-exertional fatigue 6-9 months before I *officially* came down w/ CFS on May 15, 1993. When asked, looking back I say I had sudden onset CFS because before May 15, I was able to function although I had the PE fatigue and some light-headedness/dizziness. So was it gradual onset or sudden onset? Were the pre May 15 symptoms raising my stress level because I knew something was wrong and like you, I didn't go to a doc until May 16 or so because I just thought things would get better. Yeah, I was starting to stress over my health pre May 15 along w/ normal work and family stress issues. But which came first??? Mike C. In , " erikmoldwarrior " <erikmoldwarrior@...> wrote: > > Colin Green wrote > > Count me a one male who attributes his onset of CFS to emotional > stress. Some very emotionally stressing events preceded my > determination that something was going on energy-wise. > > > I have the EBV antibody, along with 90% of the world, but was not > aware of being ill at the beginning of my CFS. > > > > It took almost a year of feeling tired before I had to admit to > myself that it might be physiological, and has been 4 years of going > to doctors and saying " what the hell is wrong with me? " , and not one > of them has helped even a little bit. > > > Back to gender stereotypes, I would say that it was my male ego > which prevented my from admitting that I was tired all the time for > so long. > > Having CFS brings on enough emotional stress to cause CFS! > > Colin > > > Perhaps the illness itself has changed so radically that one could > have a slow and progressive detioration with the same immune > abnormalities as " sudden onsets " and eventually wind up in the same > place. > We'll have to let science decide. > But the concept of being unaware, able to ignore the illness, and > describing it as " tired all the time " is not compatible with our > illness which was " beyond fatigue " , " Nothing like tiredness " and so Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Not sure I can help you. I should point out that, while I identify with my own experience of being fatigued, and not getting refreshed by sleeping, and ocaisional post-exertion fatigue, which is of the " get back into bed for 24 hours " severity, apart from this I can function, have held down my job in the meantime, as long as I have consistent access to double espressos, which I need every few hours to keep going at work. I am not bed ridden, nor can most people even notice anything, which has mostly impeded any understanding and support from close associates and loved ones, who say " you seem fine to me " , and that's that. I do have some cognitive deficits - I can barely type, and make many many mistakes no matter how careful I try to be. as you can tell from reading this I make myself fix them all... I also cannot write at all, and often can barely myself read things that I write, even when trying. This was not the case 4 years ago. It is less easy to fix my writing mistakes... So, I think I am much better off than most reading this list, which is not a bad thing at all, except that I want to be " normal " as much as the rest of you. The only possibly helpful thing I can add is that the post-exertion fatigue only presented itself some years (1 - 1.5) after I noticed the non-restorative sleep problem). The immediate emotional stress was long over before either problem, although rattled around my brain constantly (and still does to some extent) the whole time, but was not immediately happening near the onset of either. In my case the post-exertion fatigue appeared 1 to 1.5 years after I noticed the day to day fatigue and non restorative sleep thing. I hope this is helpful. Colin yakcamp22 wrote: > > Colin-this is interesting because I recall having post-exertional > fatigue 6-9 months before I *officially* came down w/ CFS on May > 15, 1993. When asked, looking back I say I had sudden onset CFS > because before May 15, I was able to function although I had the > PE fatigue and some light-headedness/dizziness. So was it gradual > onset or sudden onset? Were the pre May 15 symptoms raising my > stress level because I knew something was wrong and like you, I > didn't go to a doc until May 16 or so because I just thought things > would get better. Yeah, I was starting to stress over my health > pre May 15 along w/ normal work and family stress issues. But > which came first??? > > Mike C. > > In > <mailto:%40>, " erikmoldwarrior " > <erikmoldwarrior@...> wrote: > > > > Colin Green wrote > > > Count me a one male who attributes his onset of CFS to emotional > > stress. Some very emotionally stressing events preceded my > > determination that something was going on energy-wise. > > > > > I have the EBV antibody, along with 90% of the world, but was > not > > aware of being ill at the beginning of my CFS. > > > > > > It took almost a year of feeling tired before I had to admit to > > myself that it might be physiological, and has been 4 years of > going > > to doctors and saying " what the hell is wrong with me? " , and not > one > > of them has helped even a little bit. > > > > > Back to gender stereotypes, I would say that it was my male ego > > which prevented my from admitting that I was tired all the time > for > > so long. > > > Having CFS brings on enough emotional stress to cause CFS! > > > Colin > > > > > > Perhaps the illness itself has changed so radically that one > could > > have a slow and progressive detioration with the same immune > > abnormalities as " sudden onsets " and eventually wind up in the > same > > place. > > We'll have to let science decide. > > But the concept of being unaware, able to ignore the illness, and > > describing it as " tired all the time " is not compatible with our > > illness which was " beyond fatigue " , " Nothing like tiredness " and > so > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 " yakcamp22 " wrote: Yeah, I was starting to stress over my health > pre May 15 along w/ normal work and family stress issues. But > which came first??? > > Mike C. Well, unless one can look back in history and find incidents in which some type of stress at any intense level ever caused an illness like CFS, it really doesn't matter which came first. Stress has long been known to NOT cause anything like this for the entire known history of the human race. " But WAIT " Professor Wessely might say, " What about all those cowards in the first World War who came down with PTSD and " soldiers heart " ? The ones who deserve to be shot for betraying their brave comrades with their deliberately invented ailments? " Oh yes, I thought that one might come up! You mean all the survivors of " Spanish Flu " who had a dysregulated RNA inflammatory response from " NS1 (NonStructural One) Protein " ? In all the history of humanity, how peculiar is it that when people are forced to cite an example of post traumatic stress causing a fatigue syndrome of any type, the one they point to is of a postviral condition of a devastating pandemic nature? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2006 Report Share Posted September 6, 2006 Colin Green wrote: > I am not bed ridden, nor can most people even notice anything, which has mostly impeded any understanding and support from close associates and loved ones, who say " you seem fine to me " , and that's that. > Infuriating, isn't it? Not sick enough to prove that you are deserving of help? The amazing thing about CFS is that you can die and people will still write on your tombstone: " Died of a Bad Attitude " . There is simply no end to how sick one can be and still have the illness dismissed as an imaginary mental condition. But you may be in luck. It all depends on how you answer this question. Do your symptoms get worse when the weather changes? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Hi . I'm sure I'll regret asking this () but, okay, I'll bite. Why is that question important? in Champaign IL > Do your symptoms get worse when the weather changes? > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Hi Rich, I to fit the picture. I was in my prime reproductive years and went through a period of unbearable stress, enough to take a few down with me. Keep going with this. I think you are extraordinary, Rich. Peeking out of Lurkdom, L > > Hi, all. > > Well, I was in the medical library most of the day, today, doing a > lot of reading and thinking. I think a few more pieces of the > puzzle have come together, and I would like to tell you about it. > > By way of introduction, there have been several things rattling > around in my head lately: > > First, long-time readers will know that historically on the lists I > have been beaten up fairly soundly at times for suggesting that > emotional stress could be a contributor to the onset of CFS in some > cases. I think that for the most part it has been men on the lists > who have done most of the beating. On the other hand, I have been > told by quite a few others (I think mostly women) that emotional > stress was a major contributor to the onset of their illness. It > was tempting to suspect that the men were just being macho, but what > about taking the revolutionary point of view that (a) they know what > they're talking about, and ( they just might happen to be telling > the truth? Could it be that things are different for men and women? > > Second, I've been trying to figure out if I have a strong enough > case to send an abstract to the IACFS hypothesizing that I can > explain the reason for the much higher prevalence of CFS in women > than in men. > snipped Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 , you've expressed your clear view that Incline Village and in general CFS is caused by a pathogen (probably of unusual virulence) repeatedly. Is there a purpose to saying it every day? You might look up the history of neurasthenia. There have been different words throughout history for what is probably CFIDS today. Some of it could certainly be engendered by stress imo, along with genetic and environmental factors. You might also do an in depth study of serious meditators, and how they have permanently shifted stress responses, metabolism and brain wave patterns. > Yeah, I was starting to stress over my health > > pre May 15 along w/ normal work and family stress issues. But > > which came first??? > > > > Mike C. > > Well, unless one can look back in history and find incidents in > which some type of stress at any intense level ever caused an > illness like CFS, it really doesn't matter which came first. > Stress has long been known to NOT cause anything like this for the > entire known history of the human race. > " But WAIT " Professor Wessely might say, " What about all those > cowards in the first World War who came down with PTSD and " soldiers > heart " ? The ones who deserve to be shot for betraying their brave > comrades with their deliberately invented ailments? " > > Oh yes, I thought that one might come up! You mean all the > survivors of " Spanish Flu " who had a dysregulated RNA inflammatory > response from " NS1 (NonStructural One) Protein " ? > In all the history of humanity, how peculiar is it that when people > are forced to cite an example of post traumatic stress causing a > fatigue syndrome of any type, the one they point to is of a > postviral condition of a devastating pandemic nature? > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Hi, For the record stress was undoubtedly a cause of my ME/CFS. It was prolonged (2 years+) and severe, caused by several " life events " happening together. Mentally, I'm surprised I coped, but I did. Physically, I obviously didn't...! Phil > > Hi Rich, > > I to fit the picture. I was in my prime reproductive years and went through a period of > unbearable stress, enough to take a few down with me. Keep going with this. I think you > are extraordinary, Rich. > > Peeking out of Lurkdom, > L > > > > > Hi, all. > > > > Well, I was in the medical library most of the day, today, doing a > > lot of reading and thinking. I think a few more pieces of the > > puzzle have come together, and I would like to tell you about it. > > > > By way of introduction, there have been several things rattling > > around in my head lately: > > > > First, long-time readers will know that historically on the lists I > > have been beaten up fairly soundly at times for suggesting that > > emotional stress could be a contributor to the onset of CFS in some > > cases. I think that for the most part it has been men on the lists > > who have done most of the beating. On the other hand, I have been > > told by quite a few others (I think mostly women) that emotional > > stress was a major contributor to the onset of their illness. It > > was tempting to suspect that the men were just being macho, but what > > about taking the revolutionary point of view that (a) they know what > > they're talking about, and ( they just might happen to be telling > > the truth? Could it be that things are different for men and women? > > > > Second, I've been trying to figure out if I have a strong enough > > case to send an abstract to the IACFS hypothesizing that I can > > explain the reason for the much higher prevalence of CFS in women > > than in men. > > > snipped > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 <jenbooks13@...> wrote: > , you've expressed your clear view that Incline Village and in general CFS is caused by a pathogen (probably of unusual virulence) repeatedly. Is there a purpose to saying it every day? > > You might look up the history of neurasthenia. There have been different words throughout history for what is probably CFIDS today. Some of it could certainly be engendered by stress imo, along with genetic and environmental factors. > If you had read Osler's Web, you would know that the danger of the term CFS was recognized by ME experts from its very inception - that the " F " word would enable trivialization of a serious, disabling and life destroying illness. The illness that started " CFS " was an infectious paradigm shift that almost no one, particularly doctors, had ever seen before. CFS is certainly nothing that stress has ever been seen to do, even at the most intense extremes of stress under the harshest conditions. Those of you who complain of persistent tiredness and stress would not qualify as having original CFS, which was an extremely virulent and disabling illness whose symptoms could not be ignored and whose immunological dysregulation is demonstrable. It appears that I have not repeated the nature of true CFS enough times for some to recognize that what they are calling CFS is nothing like the epidemic that gave rise to the term. The persistence of tired/stress pseudoCFSers who are mistakenly convinced that they have " the real deal " have demonstrated that they cannot be pursuaded that their fatigue and stress is not comparable to a life destroying neurological paralysis. The purpose of the Canadian Guidelines is to clarify what " real CFS " is. I have every confidence that " fatigue and stress " theorists will attempt to overwhelm Canadian Guidelines ME/CFS as well, just as they have always encroached upon ME and tried to withdraw the intent of Ramsay's description until it fits their own perception of illness. Those believers in " stress induced CFS " have absolutely no cause to complain about Professor Wessely's treatment. This is what they are asking for, arguing for, and receiving in total accordance with their illness description. All those people who are convinced theirs is a stress induced illness already have the benefit of an entire medical system which is eager to help them with all the mental health counseling, behavioral interventions, and antidepressants they could ask for. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 " netsukeme " wrote: > > Hi . I'm sure I'll regret asking this () but, okay, I'll bite. Why is that question important? > > in Champaign IL It's a sign of a specific neurological impairment mediated by capillary hypoperfusion. However, this group is somewhat hostile to discussion of " neurological CFS " and appears to desire utilization of " The Power of the Mind " as a therapeutic intervention. So if this clue applies to you, you can backchannel me so that this group need not be bothered with physiological concepts of dysregulation. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 No offense intended but stress can permanently upregulate genes in early life actually through the methylation process that we've been discussing here, leading to consistently raised cortisol levels and that can make you more vulnerable to later stresses and illness. Not everybody in Incline Village got sick and not in the same way. Why is it useful to try and set aside Incline Village illness as this unique maelstrom that was unforgettably and unforgivably due to some unrecognized pathogen, pure and simple? Life doesn't work that way. > > > , you've expressed your clear view that Incline Village and in > general CFS is caused by a pathogen (probably of unusual virulence) > repeatedly. Is there a purpose to saying it every day? > > > > You might look up the history of neurasthenia. There have been > different words throughout history for what is probably CFIDS today. > Some of it could certainly be engendered by stress imo, along with > genetic and environmental factors. > > > > > If you had read Osler's Web, you would know that the danger of the > term CFS was recognized by ME experts from its very inception - that > the " F " word would enable trivialization of a serious, disabling and > life destroying illness. > The illness that started " CFS " was an infectious paradigm shift > that almost no one, particularly doctors, had ever seen before. > CFS is certainly nothing that stress has ever been seen to do, even > at the most intense extremes of stress under the harshest conditions. > Those of you who complain of persistent tiredness and stress would > not qualify as having original CFS, which was an extremely virulent > and disabling illness whose symptoms could not be ignored and whose > immunological dysregulation is demonstrable. > > It appears that I have not repeated the nature of true CFS enough > times for some to recognize that what they are calling CFS is > nothing like the epidemic that gave rise to the term. > > The persistence of tired/stress pseudoCFSers who are mistakenly > convinced that they have " the real deal " have demonstrated that they > cannot be pursuaded that their fatigue and stress is not comparable > to a life destroying neurological paralysis. > The purpose of the Canadian Guidelines is to clarify what " real CFS " > is. > > I have every confidence that " fatigue and stress " theorists will > attempt to overwhelm Canadian Guidelines ME/CFS as well, just as > they have always encroached upon ME and tried to withdraw the intent > of Ramsay's description until it fits their own perception of > illness. > > Those believers in " stress induced CFS " have absolutely no cause to > complain about Professor Wessely's treatment. > This is what they are asking for, arguing for, and receiving in > total accordance with their illness description. > > All those people who are convinced theirs is a stress induced > illness already have the benefit of an entire medical system which > is eager to help them with all the mental health counseling, > behavioral interventions, and antidepressants they could ask for. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 " jill1313 " wrote: > > No offense intended but stress can permanently upregulate genes in > early life actually through the methylation process that we've been > discussing here, leading to consistently raised cortisol levels and > that can make you more vulnerable to later stresses and illness. Not > everybody in Incline Village got sick and not in the same way. Why is > it useful to try and set aside Incline Village illness as this unique > maelstrom that was unforgettably and unforgivably due to some > unrecognized pathogen, pure and simple? Life doesn't work that way. > > When people saw elevated EBV titers, it just seemed natural to suspect that this was a case of perpetual Glandular Fever. People jumped to a conclusion and stuck to it, no matter that EBV was well known NOT to cause an illness like this. Dr Cheney knew that EBV was not consistent with this type of illness, and found further confirmation by identifying a few people who had the illness, but had never been exposed to EBV. " CEBV " theorists can only maintain their concept by deliberately excluding anything that conflicts with their theory, and this is what they transparently do, often to a ridiculous extreme. That's why I keep bringing up Incline. In order for stress theorists to connect their " Fall apart from anything and everything " concepts to CFS, they have to ignore the very cohort that got CFS started, because in our case, just like EBV or stress, the illness didn't much care if you you had it or not. It is amusing to see people desperately attempt to disconnect CFS entirely from the people used as prototypes for CFS in an attempt to make their theory fit the facts. But life doesn't work that way. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Yes, my symtoms change, according to the weather...and when I drive from a very humid, moldy environment to a low humidity, arid environment, my symptoms lessen a great deal in intensity..and I become happer, overall. However, now the high altitude has lessened my ability to breathe, and showing cardiac problems, at a older age...so I will have to go to a low, but dry climate. Can you explain, in greater detail what this signifies or point me, in the right direction? TC, Amelia erikmoldwarrior <erikmoldwarrior@...> wrote: Colin Green wrote: > I am not bed ridden, nor can most people even notice anything, which has mostly impeded any understanding and support from close associates and loved ones, who say " you seem fine to me " , and that's that. > Infuriating, isn't it? Not sick enough to prove that you are deserving of help? The amazing thing about CFS is that you can die and people will still write on your tombstone: " Died of a Bad Attitude " . There is simply no end to how sick one can be and still have the illness dismissed as an imaginary mental condition. But you may be in luck. It all depends on how you answer this question. Do your symptoms get worse when the weather changes? - __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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