Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 It's not nonsense at all. I'm a personal trainer, 50 yrs old, and have been ill since 1989. I was disabled for many years and fought my way back to the level I am at now. I am still ill, and take a lot of meds, including provigil which promotes wakefulness. Without all the meds and supplements I take, I would have no immune system. I even had melanoma several years ago. I have posted on here many times in the past. I know it's difficult to imagine, but with the right treatments, you can fight your way back, and exercise at your threshold. I've been in business now for 11 years and formerly was a hospital dietitian, which I can no longer do because of the CFIDS/FM. I specialize in clients with medical problems, just like me. Carol in LI, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 On 10/26/06, pjeanneus <pj7@...> wrote: > > Bob, she had a lot of spirit and toughed it out. The hallmark symptom of ME is that is gets worse - much worse, in a big hurry - with exertion. There is absolutely no way Akers had that. Maybe through some incredibly loose reading of the crap CDC guidleines, she had CFS, but I just don't see how - how do you have fatigue that reduces your activities by 50% and still be a pro soccer player? It just does not seem possible. - Bob N. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 > On 10/26/06, pjeanneus <pj7@...> wrote: > > Bob, she had a lot of spirit and toughed it out. > > > The hallmark symptom of ME is that is gets worse - much worse, in a > big hurry - with exertion. There is absolutely no way Akers had that. > Maybe through some incredibly loose reading of the crap CDC > guidleines, she had CFS, but I just don't see how - how do you have > fatigue that reduces your activities by 50% and still be a pro soccer > player? It just does not seem possible. > > - Bob N. We had champion swimmers, marathon runners, a tennis pro, and a hang glider instructor who ran wind sprints all day while holding on to students flying wires - and there was absolutely NO " toughing it out " . Completely impossible. Out of the question. This is a physical incapacity that absolutely did not allow for mental compensation when the body was unwilling to respond. No amount of spirit enabled us to walk to the bathroom when we were forced to crawl. But... in light of Dr Bell's IV infusion results, perhaps there is a reason why was able to keep on going. Or perhaps she was still in the " slowly going downhill " stage that Gerald (Jerry) Kennedy was in during the few months that he had before succumbing to the same degree as Janice. If Dr is satisfied that has CFS, that's good enough for me. - Station: Cable News Network (CNN) Date: Oktober 24, 1999 Programme: CNN & Time URL: http://cnn.com/TRANSCRIPTS/impc.html (home page) http://cnn.com/CNNPromos/cnntime (home page 2) http://cnn.com/TRANSCRIPTS/9910/24/impc.00.html (text) SICK AND TIRED -------------- ANNOUNCER: CNN & TIME. Tonight, " Sick and Tired. " It's been called the yuppie flu, but it's been anything but a passing fad. It is a major public outcry. We all have days when it feels like we just can't roll out of bed. We're tired, listless, completely drained. But imagine feeling that way and worse day in and day out for weeks, months, and even years. JEFF GREENFIELD, HOST: We're talking about chronic fatigue syndrome, the mysterious, debilitating illness that first showed up in the mid- 1980s. And if you thought that this yuppie flu was the invention of hypochondriacs or had gone the way of Duran Duran or somehow had been cured, consider this. In the United States alone right now, hundreds of thousands of people may be struggling with CFS. Here's Daryn Kagan. (BEGIN VIDEOTAPE) DARYN KAGAN, CNN CORRESPONDENT (voice-over): As the 1999 Women's World Cup came down to the wire in penalty kicks, another drama was taking place behind the scenes. MICHELLE AKERS, U.S. WOMEN'S SOCCER TEAM: I'm graying out, and I can't hear, and my body's just clenched. SPORTS ANNOUNCER: Look at Akers. She leads by example. KAGAN: Akers played 90 minutes in blistering heat, until her body gave out. SPORTS ANNOUNCER: All eyes are on Akers. AKERS: So they put me on the table and then started trying to get the IVs in. KAGAN: Akers' doctors, coaches, and teammates know her symptoms are real, but some people think the disease she's recovering from, chronic fatigue syndrome, is not. (on camera): When you say worst, what does worst feel like for people who don't know what that feels like? AKERS: It's like just feeling totally empty on the inside. It's like -- there's no reserve, no energy. It's like a black hole in the very depths of your soul. (voice-over): For years, CFS has been dismissed by many in the general public, the medical profession, even experts at the Federal Centers for Disease Control and Prevention. Fifteen years ago, a mysterious illness swept through the Alpine resorts and towns near Lake Tahoe. Incline Village, Nevada, was ground zero. DR. DAN PETERSON, PHYSICIAN: The first ones were isolated cases. A marathon runner in town who couldn't run any longer. KAGAN: Dr. Dan is a local physician. He saw the first cases. PETERSON: Then we started seeing the clustering with the girls' high school basketball team where the entire team became ill -- extremely ill. KAGAN: At Tahoe-Truckee High School, dozens of students came down with symptoms resembling mononucleosis. So did a third of the teachers. JERRY KENNEDY: You're not tired. You're -- it's like the blood's drained out of you. KAGAN: Like Jerry Kennedy who taught auto mechanics and drafting and his wife Janice (ph) who taught English. JANICE KENNEDY, FORMER HIGH SCHOOL TEACHER: It's like having bricks piled on you. It's as though you're fighting to move at all. JERRY KENNEDY: It's the worst feeling I've ever had in my life. I can't compare it to anything else that's ever happened to me. KAGAN: The number of cases multiplied during the summer of 1985. PETERSON: That's when I first thought, well, there's some new contagious disease, you know, I mean, there's something in the water, some Typhoid had come into the school system and affected the kids and the teachers. KAGAN: Besides fatigue, most patients developed a bizarre mental fogginess. JERRY KENNEDY: You feel dumb because you can't remember things. You forget people's -- you don't even comprehend the names. You lose it. JANICE KENNEDY: As an English teacher, I remember one horrible moment when I asked myself, " What is a subordinate clause? " I could not remember what a subordinate clause was. KAGAN: Eventually, more than 250 people living around Lake Tahoe seemed to have the illness. For months, Dr. couldn't persuade anyone to investigate. Finally, the CDC agreed to send a two-man team. JANICE KENNEDY: They didn't seem to feel that there was an epidemic, and we knew there was. It might have been small, but it definitely existed. DR. WILLIAM REEVES, CDC EPIDEMIOLOGIST: CDC's study at that time failed to identify any evidence that there was an unusual occurrence of a chronically fatiguing illness. KAGAN: Dr. Reeves is the CDC epidemiologist now in charge of investigating chronic fatigue syndrome. He didn't go to Incline Village, but he defends the team that did. He also defends their findings, which are still controversial today. REEVES: Using epidemiologic public expertise of the time, there was no evidence, clear-cut, replicable evidence that anything unusual is happening in that population. PETERSON: As I just said right now, I'm right about this. I know that these people were well, and now they're sick, and they're staying sick. So I have to hang in there and be diligent about it, regardless of what the rest of rest of the world thinks. KAGAN: Over the years, chronic fatigue syndrome has been thought of as a trendy illness, the yuppie flu. Sufferers say the official name the CDC gave it didn't help. JANICE KENNEDY: Ever since they started calling it chronic fatigue syndrome, I think every person who has had it, every family member of someone who has it, every doctor who is familiar with it hates that name because it seems to trivialize. KAGAN: A diagnostic test for CFS has yet to be developed, but the CDC did come up with a definition: debilitating fatigue lasting at least six months, along with four of eight other symptoms. They include sore throat, muscle and joint pain, short-term memory loss, and an inability to recover from exertion. New cases have continued to crop up all over the country. Akers first noticed her symptoms in 1991. AKERS: I would go into the shower after training and just cry and cry and cry. It was the only place I could go to where no one would see me and just say, " I can't do this. I can't do it. " KAGAN: Akers sidelined herself for almost an entire season in order to recover, but when she came back to soccer, she suffered constant relapses. Still, she kept the illness secret from her teammates, friends, even her family. Finally, in 1996, Akers went public. She wrote an emotional letter to Congress describing a day in the life of a typical sufferer. AKERS: That was the first time I admitted publicly even to my folks how bad I was actually feeling, and I read it to my dad over the phone. I remember my dad was just stunned. KAGAN: And so were some members of Congress who voted to give millions of dollars to the CDC to solve the mystery of chronic fatigue. But less than half actually went directly to CFS research. That led to another mystery. What happened to the money? (on camera): This year, federal investigators found out. The CDC diverted between $9 and $13 million dollars, money that Congress had specifically set aside to study CFS. Instead, it was spent on other diseases, like polio and measles. (voice-over): It was Dr. Reeves, the head of the government CFS lab who helped bring the diversion to light. He says he did so after a superior asked him to lie about how much money was going to CFS research. REEVES: I felt that the best thing to do was just to report this to Congress, and that's when I formally blew the whistle. KAGAN: But not before CDC officials gave inaccurate and misleading information to Congress about how the money was spent. But why was the money taken from CFS in the first place? REEVES: It was taken from chronic fatigue syndrome because it was not perceived by the people doing it as important as the other ones, not perceived as an infectious disease. KAGAN: The CDC's current director, Dr. Koplan, says all the missing money will be restored over the next four years, and while nobody was fired, the division overseeing CFS has been put on probationary status. DR. JEFFREY KOPLAN, CDC DIRECTOR: CDC, in regard to chronic fatigue syndrome, misspent funds allocated to us for chronic fatigue syndrome, and for that, we sincerely apologize to all parties involved and in particular the people and their families that suffer from chronic fatigue syndrome. REEVES: We were set back. There is no question about that. We were set back substantially. Programs suffered because of this. This has probably set us back three to five years. JERRY KENNEDY: I'm not surprised that the money went someplace else. Somebody had the power to move it some other place, some pet project they had, and they did it. KAGAN: Perhaps the government's premier laboratory didn't make CFS a priority, but other researchers have. Dr. Dedra Buchwald, a Harvard-trained physician, arrived in Incline Village after the CDC left, and she's been studying CFS ever since. She believes she's on the verge of a breakthrough. She's designed a unique study using identical twins. She compares sick twins to their healthy counterparts, trying to detect differences caused by CFS. DR. DEDRA BUCHWALD, CFS RESEARCHER: So they'll put the electrodes on your head, and then what they do is -- they'll monitor your brain waves. KAGAN: (ph) and Martha (ph) are the 21st pair of twins to take part in Buchwald's study. Martha was an Arkansas state trooper for 20 years, until a series of worsening symptoms forced her into early retirement. MARTHA WILLIAMS, FORMER ARKANSAS STATE TROOPER: I always had a reason for why I was hurting. It was either the leather gear or the bulletproof vest. The boots. Getting in and out of the car. The headaches was from my hat. Or my eyes hurt because the sun... KAGAN: is a construction worker in Missouri. She's still on the job. MARY NELSON, CONSTRUCTION WORKER: Oh, yes. Yes. Anything they've got that comes in by delivery, if I'm -- I happen to be at the warehouse, I'm unloading it. KAGAN: Researchers aren't supposed to know which twin is sick, but it's pretty obvious. Martha's symptoms - fatigue, muscle pain, difficulty thinking and sleeping -- are familiar indicators of CFS. WILLIAMS: Your legs hurt. It feels like you're walking on needles. In the night while you're trying to sleep, you wake up, and it's hard to describe to someone, but it's like your arms and your legs are asleep, or they're numb but they hurt. (BEGIN VIDEO CLIP) CFS RESEARCHER: Here we go. Just stare at that thing, and if you have to blink, blink all at once, get it over with. (END VIDEO CLIP) KAGAN: For an entire week, the twins were put through a battery of tests, tests to measure exercise tolerance, memory and thought processing, sleep disturbances, and blood hormone levels. BUCHWALD: What we thought was that there would very substantial differences between the healthy twin and the sick twin. KAGAN: But there wasn't. Both twins performed low on many of the tests. Buchwald believes it's because both twins have a genetic predisposition to CFS. BUCHWALD: Right now, our thinking is just that there is a group of people that are vulnerable or that are likely to be vulnerable to get CFS. KAGAN: Buchwald's study presents a new option, that hereditary plays a major role in chronic fatigue. BUCHWALD: Most people who have that predisposition will never get chronic fatigue syndrome, but for an unfortunate few, they will be exposed to some series of triggers or trigger, which could be anything from an infectious illness to an episode of depression or a motor- vehicle accident, that will trigger this chronic fatigue syndrome. KAGAN: Meanwhile, the Centers for Disease Control is still trying to catch up. KOPLAN: We're looking at what we have now, what resources we have in terms of people and laboratory techniques, what studies need to be done, who else we need to involve from outside in giving us more information. So we're trying to set a forward course in saying how can we make a difference with this disease. KAGAN: They're starting with a new national head count. As recently as two years ago, the CDC believed only 10,000 Americans had the illness. Now the CDC says, based on a study in Wichita, Kansas, that number is actually 40 times higher. Today, the CDC estimates 400,000 Americans over age 18 have active CFS. REEVES: This is a major public health problem, and as I said, in Wichita at least, this is about a quarter the number of people that have -- women that have breast cancer, and it's about four times more than the number of women that have cervical cancer. KAGAN: But 15 years after the outbreak of CFS in Incline Village, Nevada, the man who first identified the illness expected to be further along. PETERSON: I mean, the CDC is still counting heads, still saying this disease exists, and here are the numbers. Well, we -- I never expected to be here still quandering (ph) this problem 15 years later. I really didn't. KAGAN: Recently, did his own follow-up of 180 of his original patients. PETERSON: About 30 percent of them are still severely disabled. The remainder have had substantial or at least partial improvements. KAGAN: And how many are completely recovered? PETERSON: None. (END VIDEOTAPE) GREENFIELD: In April, the Social Security administration official recognized chronic fatigue syndrome as a medical impairment. That makes it much easier for CFS patients to receive disability payments. -------- © 1999 Cable News Network --------------------------------------------- Co-Cure is not a discussion list. Please do not reply to the list. Co-Cure Archives: http://listserv.nodak.edu/archives/co-cure.html Co-Cure Website: http://www.co-cure.org --------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Bob, I assume you were responding to my recent email regarding juicing when I mentioned . I don't know if she has/had CFS, liver disease, adrenal disfunction, etc. I was simply pointing out that someone who had the Canadian definition of 'CFS' used juicing to help improve. It was on her website which I think she discontinued. Mike C - In , > Bob N. wrote: > > > > When will people stop talking about Akers? How could any > > body think that she had CFIDS and could still be a profesional > > athlete? what nonsense. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Yes,Juicing does worsen my blood sugar problems.But juicing is helping me to nourish myself. So,I use it very carefully. I must say that I found great benefits from juicing and than Mike for reminding it some months ago.There were days I would die because of undernourishment due to digestive problems if I did not make juicing. I do it couple of times a week at this point,use mostly vegetables and add little amounts of fruits only to make the taste better. I use mostly beets,parsley,green veggies and add only 1 apple or pear to make it drinkable. bw nil Re: Akers > Bob, I assume you were responding to my recent email regarding juicing > when I mentioned . I don't know if she has/had CFS, liver > disease, adrenal disfunction, etc. I was simply pointing out that > someone who had the Canadian definition of 'CFS' used juicing to > help improve. It was on her website which I think she discontinued. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Maybe we should change the subject line on this thread to 'Juicing' so as not to upset anyone, plus, that's what it is about, not MA. Also, was looking very well conditioned the last time I saw her on HBO, so I don't think she should be the poster child for 'CFS' any more that Cher should be. Mike C > > Yes,Juicing does worsen my blood sugar problems.But juicing is helping me to > nourish myself. So,I use it very carefully. I must say that I found great > benefits from juicing and than Mike for reminding it some months ago.There > were days I would die because of undernourishment due to digestive problems > if I did not make juicing. > I do it couple of times a week at this point,use mostly vegetables and add > little amounts of fruits only to make the taste better. > I use mostly > beets,parsley,green veggies and add only 1 apple or pear to make it > drinkable. > bw > nil > Re: Akers > > > > Bob, I assume you were responding to my recent email regarding juicing > > when I mentioned . I don't know if she has/had CFS, liver > > disease, adrenal disfunction, etc. I was simply pointing out that > > someone who had the Canadian definition of 'CFS' used juicing to > > help improve. It was on her website which I think she discontinued. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Additionally, there was a professional golfer by the name of Tim Simpson (not Simpson) who was diagnosed w/ CFS about 11 years ago. He had to quit the regular tour, but now that he has turned 50 he is playing on the Champions Tour which is for pros who are at least 50 years old. So perhaps professional athletes are able to 1)not get as sick as the rest of us, 2)are able to improve to a greater degree than the mean, or 3) something else like getting access to better medical services. Mike C. In , " erikmoldwarrior " <erikmoldwarrior@...> wrote: > We had champion swimmers, marathon runners, a tennis pro, and a hang > glider instructor who ran wind sprints all day while holding on to > students flying wires - and there was absolutely NO " toughing it out " . > Completely impossible. Out of the question. This is a physical > incapacity that absolutely did not allow for mental compensation when > the body was unwilling to respond. > No amount of spirit enabled us to walk to the bathroom when we were > forced to crawl. > But... in light of Dr Bell's IV infusion results, perhaps there is a > reason why was able to keep on going. > Or perhaps she was still in the " slowly going downhill " stage that > Gerald (Jerry) Kennedy was in during the few months that he had before > succumbing to the same degree as Janice. > If Dr is satisfied that has CFS, that's good enough > for me. > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Yep. Adrienne Re: Akers On 10/26/06, pjeanneus <pj7@...> wrote: > > Bob, she had a lot of spirit and toughed it out. The hallmark symptom of ME is that is gets worse - much worse, in a big hurry - with exertion. There is absolutely no way Akers had that. Maybe through some incredibly loose reading of the crap CDC guidleines, she had CFS, but I just don't see how - how do you have fatigue that reduces your activities by 50% and still be a pro soccer player? It just does not seem possible. - Bob N. This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Hum, might be interesting to find out how she recovered, as she most certainly was a very sick woman. a Carnes > > Maybe we should change the subject line on this thread to 'Juicing' > so as not to upset anyone, plus, that's what it is about, not MA. > Also, was looking very well conditioned the last time I > saw her on HBO, so I don't think she should be the poster child for > 'CFS' any more that Cher should be. > > Mike C > > > > > > > > Yes,Juicing does worsen my blood sugar problems.But juicing is > helping me to > > nourish myself. So,I use it very carefully. I must say that I > found great > > benefits from juicing and than Mike for reminding it some months > ago.There > > were days I would die because of undernourishment due to digestive > problems > > if I did not make juicing. > > I do it couple of times a week at this point,use mostly vegetables > and add > > little amounts of fruits only to make the taste better. > > I use mostly > > beets,parsley,green veggies and add only 1 apple or pear to make > it > > drinkable. > > bw > > nil > > Re: Akers > > > > > > > Bob, I assume you were responding to my recent email regarding > juicing > > > when I mentioned . I don't know if she has/had CFS, > liver > > > disease, adrenal disfunction, etc. I was simply pointing out > that > > > someone who had the Canadian definition of 'CFS' used juicing to > > > help improve. It was on her website which I think she > discontinued. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Hi everybody, I had CFS for 13 years, which means that I then started to get tired ( around age 16), other symptoms where there since longer (childhood). I've been very ill, during a period of 3 years I slept for more then 19 hours a day, sometimes not even able to move... the other years I was 5-6 months 'ok' and then I had a fall back... which means I couldn't do much anymore, not even read... and I don't know how or why... but I'm cured since more then a year! I don't take any medication anymore (only some glucosomyne for my joint degeneration's), I sleep normal, eat normal and have plenty of energy. I continue my studies computer-science/maths know because I even regained my abstract thinking and memory... I'm not a top athlete... I never did any serious kind of sport... I'm a " typical " science and study girl (imagine a romantic-punk-geek). I don't know anybody else in person who's been cured and regained their strength... I have some theory why I got cured... but since nobody knows what goes wrong or why I got better, I can't prove anything... but being a science person I'm trying everything I can to understand this... maybe my theory is wrong and just a stupid idea to help myself not feeling guilty. I'm so happy that I finally can start living my life, but I know to-many people who are still fighting every day like I did... and I can't even tell them how I did it or help them in anyway... maybe only this: it's possible!!!! Don't believe any doctor or person who tells you something else!!! I'm not a superwoman, so if it can happen to me, it can happen to everybody! And also... I know that a lot of people claim to have CFS, while they are just a bit tired or depressed (not that this isn't a bad thing) but those people can cure more easily... I wasn't like that, I've been to several hospitals and was officially diagnosed as CFS patient, several times. They said I was a hopeless case and that I could forget my dreams of being able to study a phd and probably would end up as a plant in a wheel chair... THEY WHERE WRONG! I'm just started my research know, before I didn't have the strength or ability for that, so if anybody could help me with providing me information about latest research or theories... mine has something to do with the hypophysis and some horrible balance which pulls you back every-time. I hope this can give you some courage... and please feel free to ask any question, On 28/10/2006, at 9:24 AM, yakcamp22 wrote: > Additionally, there was a professional golfer by the name of Tim > Simpson (not Simpson) who was diagnosed w/ CFS about 11 years > ago. He had to quit the regular tour, but now that he has turned 50 > he is playing on the Champions Tour which is for pros who are at > least 50 years old. So perhaps professional athletes are able to > 1)not get as sick as the rest of us, 2)are able to improve to a > greater degree than the mean, or 3) something else like getting > access to better medical services. > > Mike C. > > In , " erikmoldwarrior " > <erikmoldwarrior@...> wrote: > > We had champion swimmers, marathon runners, a tennis pro, and a > hang > > glider instructor who ran wind sprints all day while holding on to > > students flying wires - and there was absolutely NO " toughing it > out " . > > Completely impossible. Out of the question. This is a physical > > incapacity that absolutely did not allow for mental compensation > when > > the body was unwilling to respond. > > No amount of spirit enabled us to walk to the bathroom when we > were > > forced to crawl. > > But... in light of Dr Bell's IV infusion results, perhaps there > is a > > reason why was able to keep on going. > > Or perhaps she was still in the " slowly going downhill " stage > that > > Gerald (Jerry) Kennedy was in during the few months that he had > before > > succumbing to the same degree as Janice. > > If Dr is satisfied that has CFS, that's good > enough > > for me. > > - > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 a-MA has responded to me via email when I asked her a question, even when she was more famous. If we could find her email address, your suggestion below would be a good idea, IMO. Mike C > > Hum, might be interesting to find out how she recovered, as she most > certainly was a very sick woman. > > a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 , ainda <ainda1377@...> wrote: > I have some theory why I got cured... but since nobody knows what > goes wrong or why I got better, I can't prove anything... but being a science person I'm trying everything I can to understand this... > Sir Osler said " Listen to the patient, he will give you his diagnosis " . It's uncanny how people sometimes go straight to the heart of the matter, even if the reasons are unclear and don't seem to make sense. What do you think happened? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 What a great story! I think more people than we know get well. There's 's story on the CFS Phoenix website - sick for 2 decades and well now. Studies have shown that if you're going to get well that its probably going to happen in the first two years but that most people do get better over time. It would be great to have your story on the CFS Phoenix website - inspirational to many who have experienced terrible times. http://phoenix-cfs.org/The%20SITE/StoriesCFS.htm I'd also like know what exactly you did - if you did anything at all - that helped you get well. Yours truly, Cort ainda <ainda1377@...> wrote: Hi everybody, I had CFS for 13 years, which means that I then started to get tired ( around age 16), other symptoms where there since longer (childhood). I've been very ill, during a period of 3 years I slept for more then 19 hours a day, sometimes not even able to move... the other years I was 5-6 months 'ok' and then I had a fall back... which means I couldn't do much anymore, not even read... and I don't know how or why... but I'm cured since more then a year! I don't take any medication anymore (only some glucosomyne for my joint degeneration's), I sleep normal, eat normal and have plenty of energy. I continue my studies computer-science/maths know because I even regained my abstract thinking and memory... I'm not a top athlete... I never did any serious kind of sport... I'm a " typical " science and study girl (imagine a romantic-punk-geek). I don't know anybody else in person who's been cured and regained their strength... I have some theory why I got cured... but since nobody knows what goes wrong or why I got better, I can't prove anything... but being a science person I'm trying everything I can to understand this... maybe my theory is wrong and just a stupid idea to help myself not feeling guilty. I'm so happy that I finally can start living my life, but I know to-many people who are still fighting every day like I did... and I can't even tell them how I did it or help them in anyway... maybe only this: it's possible!!!! Don't believe any doctor or person who tells you something else!!! I'm not a superwoman, so if it can happen to me, it can happen to everybody! And also... I know that a lot of people claim to have CFS, while they are just a bit tired or depressed (not that this isn't a bad thing) but those people can cure more easily... I wasn't like that, I've been to several hospitals and was officially diagnosed as CFS patient, several times. They said I was a hopeless case and that I could forget my dreams of being able to study a phd and probably would end up as a plant in a wheel chair... THEY WHERE WRONG! I'm just started my research know, before I didn't have the strength or ability for that, so if anybody could help me with providing me information about latest research or theories... mine has something to do with the hypophysis and some horrible balance which pulls you back every-time. I hope this can give you some courage... and please feel free to ask any question, On 28/10/2006, at 9:24 AM, yakcamp22 wrote: > Additionally, there was a professional golfer by the name of Tim > Simpson (not Simpson) who was diagnosed w/ CFS about 11 years > ago. He had to quit the regular tour, but now that he has turned 50 > he is playing on the Champions Tour which is for pros who are at > least 50 years old. So perhaps professional athletes are able to > 1)not get as sick as the rest of us, 2)are able to improve to a > greater degree than the mean, or 3) something else like getting > access to better medical services. > > Mike C. > > In , " erikmoldwarrior " > <erikmoldwarrior@...> wrote: > > We had champion swimmers, marathon runners, a tennis pro, and a > hang > > glider instructor who ran wind sprints all day while holding on to > > students flying wires - and there was absolutely NO " toughing it > out " . > > Completely impossible. Out of the question. This is a physical > > incapacity that absolutely did not allow for mental compensation > when > > the body was unwilling to respond. > > No amount of spirit enabled us to walk to the bathroom when we > were > > forced to crawl. > > But... in light of Dr Bell's IV infusion results, perhaps there > is a > > reason why was able to keep on going. > > Or perhaps she was still in the " slowly going downhill " stage > that > > Gerald (Jerry) Kennedy was in during the few months that he had > before > > succumbing to the same degree as Janice. > > If Dr is satisfied that has CFS, that's good > enough > > for me. > > - > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 I want to be clear that I did not write anything in this post. Please be careful when you edit and repost things. I would never have said any of these remarks about Akers except that she had a lot of spirit and toughed it out, but I didn't even write that. a Carnes > > Yep. > Adrienne > Re: Akers > > > On 10/26/06, pjeanneus <pj7@...> wrote: > > > > > Bob, she had a lot of spirit and toughed it out. > > > The hallmark symptom of ME is that is gets worse - much worse, in a > big hurry - with exertion. There is absolutely no way Akers had that. > > Maybe through some incredibly loose reading of the crap CDC > guidleines, she had CFS, but I just don't see how - how do you have > fatigue that reduces your activities by 50% and still be a pro soccer > player? It just does not seem possible. > > - Bob N. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 My stepsister is very good friends with her. I will call and ask her how is doing. Last I heard she had done a lot of alternative things. a CArnes > > a-MA has responded to me via email when I asked her a question, > even when she was more famous. If we could find her email address, > your suggestion below would be a good idea, IMO. > > > Mike C > > > > > > > Hum, might be interesting to find out how she recovered, as she most > > certainly was a very sick woman. > > > > a Carnes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 She used to have it posted somehwere on line. I rememebr that because i took a lot of the same mes and supplmements at that time. Carol in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 It gets worse on exertion without the right treatments, and when you work outside of your threshold. As you get better your threshold increases. I've have personally trained many people with CFS/FM, working within their threshold. Please do not discourage low intensity exercise. It is so important, with proper education/and or supervision. At the very least, go to the pool and do water aerobics. It makes you feel so much better. Carol in LI, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 When I was still very sick, I also looked wll conditioned, and hated hearing that!! Carol in LI, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 I am exercising at home now, with the help of a p.t., for 1/2 hr, 2x/wk. (Need to up it to 3x) I am doing stretching and toning, using weights and exercise ball. Without the therapist present no way I would've bothered, because I was in a funk, but I went ahead and boy, did it help. I sure felt better. And I love the feeling of a little burn. I have-or had- the classic symptoms of CFS/ME, including post-exertional fatigue, and have been really sick since the early '80's. One thing I avoid doing, tho it was easier last time I tried, is lying down flat to work out. I get brain fog from that. Adrienne Re: Akers It gets worse on exertion without the right treatments, and when you work outside of your threshold. As you get better your threshold increases. I've have personally trained many people with CFS/FM, working within their threshold. Please do not discourage low intensity exercise. It is so important, with proper education/and or supervision. At the very least, go to the pool and do water aerobics. It makes you feel so much better. Carol in LI, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 Where in " low intensity exercise " does professinal soccer fit? I agre that exercise within your limits is a good thing, though. On 10/28/06, Cattttttt@... <Cattttttt@...> wrote: > It gets worse on exertion without the right treatments, and when you work > outside of your threshold. As you get better your threshold increases. I've have > personally trained many people with CFS/FM, working within their threshold. > Please do not discourage low intensity exercise. It is so important, with > proper education/and or supervision. At the very least, go to the pool and do > water aerobics. It makes you feel so much better. > > Carol in LI, NY > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 She had to retire because of it; couldn't practice much, felt terrible after games - I think she had it - I think there is a broad continium of CFS severity ranging from people who are tired all the time but can still function to people who cant do anything at all. bob niederman <bobn1955@...> wrote: On 10/26/06, pjeanneus <pj7@...> wrote: > > Bob, she had a lot of spirit and toughed it out. The hallmark symptom of ME is that is gets worse - much worse, in a big hurry - with exertion. There is absolutely no way Akers had that. Maybe through some incredibly loose reading of the crap CDC guidleines, she had CFS, but I just don't see how - how do you have fatigue that reduces your activities by 50% and still be a pro soccer player? It just does not seem possible. - Bob N. --------------------------------- Cheap Talk? Check out Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 > > Yes,Juicing does worsen my blood sugar problems.But juicing is helping me to > nourish myself. So,I use it very carefully. I must say that I found great > benefits from juicing and than Mike for reminding it some months ago.There > were days I would die because of undernourishment due to digestive problems > if I did not make juicing. > I do it couple of times a week at this point,use mostly vegetables and add > little amounts of fruits only to make the taste better. > I use mostly > beets,parsley,green veggies and add only 1 apple or pear to make it > drinkable. > bw > nil ** I also have problems with fruit, can not tolerate much, and did try juicing for awhile. But that was hard. I now use a supplement that seems to have a similar effect to juicing, it is called 'Juice Plus'. The product is sold MLM, but can also be purchased direct from their website. The JP has most of the sugars removed, so it is just concentrated juice in a capsule. It has been very helpful to me, helping energy a small amount, helping me not feel hungry all the time, activating my immune system (normalizing temp and I now get fever response sometimes again), and also helping gain a little more muscle. And a lot less effort than juicing. I do still juice sometimes, but always take JP. --Kurt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 Sorry-but it is almost impossible to be very sick for 6-9 months or more w/ no exercise and look well conditioned. You must be a very rare exception. The longer this DD goes on, the worse one must look or at least feel. If one doesn't have exercise intolerance, then it is probably not CFS. It is impossible to go 5 years without exercise and be well conditioned. That being said, when I was at my worst within the first year, I looked pretty good-but it didn't last. Mike C > > When I was still very sick, I also looked wll conditioned, and hated hearing > that!! > > Carol in LI, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2006 Report Share Posted October 29, 2006 I agree with this post. I am another example. I used to be an aerobics instructor, teaching 15 high intensity classes a week, and was a hospital dietitian. I was disabled for years. I am now a personal trainer/nutritionist. I could never work out at the same capacity that I did prior to being sick, but after many years of being sick, I was able to work out again. The thing we all hate most about this illness is that people deny that we have it because there are things we can do. Instead of denying that someone has it, we should instead ask them what they did to be able to get well enough to resume these parts of their lives again. Carol in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2006 Report Share Posted October 29, 2006 Adrienne, I am so glad to hear that you are exercising with a PT. I hope that if you hits some bumps in the road you don't get discouraged and give up. Just know when your body needs a rest and listen to your body. If your eyes start to burn or your hands turn ice cold, or your throat hurts more than a tickle, you are doing too much. I always get brain fog from working out, and I do it for a living! If you rest afterwards, it will pass. When my nose gets a little stuffy, I know it is also time to stop. When I first began exercising again, I found ENADA to be useful if I got fatigued and too much brain fog. Also, I take Jarrow reduced L glutathione. Many people don't believe in taking it in capsule form, but I know for sure that it works for me. I hope your insurance gives you enough sessions to learn how to exercise safely so you can continue yourself afterwards. Also, if you need a week off after a while, just take it, and then resume. Carol in LI, NY Quote Link to comment Share on other sites More sharing options...
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