Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Hi , If it doesn't come through in another format please could you scan it - I'd be very interested but am in the UK - rather a long way away to be buying the LA Times ;-) Rosie Subject: Great LA Times article on CFS I'm in LA so not sure if this newspaper goes out anywhere else; but there was a great article in it (front page!!) in which it discussed how bebilitating the illness is; how there are 4 sub-groups who have it; how it can be worse than those with AIDS or on chemo, the researchers also identified many genes which would likely lead to MUCH better treatments in the future. Its in the April 21st issue (friday). It should be online at some point but if not I could scan it if no one can find it anywhere else. It is a must read and something one would really want to share with their family and friends, especially the skeptics. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Hi, here is a url for this story. http://www.latimes.com/news/printedition/la-sci-fatigue21apr21,0,7025295.story Regards Simon Lawrence Great LA Times article on CFS > > I'm in LA so not sure if this newspaper goes out anywhere else; but > there > was a great article in it (front page!!) in which it discussed how > bebilitating the illness is; how there are 4 sub-groups who have it; how > it can be worse > than those with AIDS or on chemo, the researchers also identified many > genes > which would likely lead to MUCH better treatments in the future. Its > in the > April 21st issue (friday). It should be online at some point but if > not I > could scan it if no one can find it anywhere else. It is a must read > and > something one would really want to share with their family and friends, > > especially the skeptics. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Sorry to be such a killjoy, but the LA Times article has another red flag for me. Only 16% of the people with CFS had been diagnosed. I know that I was so sick when I first came down with ME/CFIDS that I could not have gone on with my life until someone contacted me at random and informed me that I had CFS. It did take several months for me to get the diagnosis of ME/CFIDS (in 1991) but I went to a number of doctors during that period and could not believe my ears when they told me they couldn't find anything wrong with me after I explained to them how sick I was. I looked sick too. I was waking up constantly through the night and dragging my half dead body around during the day. I have my doubts that the CFS patients in this study have the same illness that I have. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 " Tomcy6 " wrote: > Sorry to be such a killjoy, but the LA Times article has another red flag for me. Only 16% of the people with CFS had been diagnosed. I know that I was so sick when I first came down with ME/CFIDS that I could not have gone on with my life until someone contacted me at random and informed me that I had CFS. It did take several months for me to get the diagnosis of ME/CFIDS (in 1991) but I went to a number of doctors during that period and could not believe my ears when they told me they couldn't find anything wrong with me after I explained to them how sick I was. I looked sick too. I was waking up constantly through the night and dragging my half dead body around during the day. I have my doubts that the CFS patients in this study have the same illness that I have. > Tom Tom. You are absolutely right! You can see hints of the CDC " put up job " strategy of using Reeves as a whistleblower to get themselves out of a jam after they stole the money and lied to Congress in the CNN interview below. It's playing " Good CDC / Bad CDC " and gets them off the hook with less fuss than a Congressional censure and nothing more than a " sincere apology " . Reeves defends the team that went to Incline saying there was no evidence. That is a bald faced lie. Ask anybody who was there. Ask the Kennedy's or Dr . It's expressed in almost every interview that this illness could not possibly be overlooked. You could spot any of us at a hundred feet with that weird staggering gait we used when we could walk at all. Not only that, some people had their eyes almost completely shut from myasthenia gravis, and EVERY ONE of us had dark circles under our eyes worse than a heroin addict. I remember going to Candace Gleeds support group meeting at Lord of Mercy Lutheran church on Pyramid highway and wondering if she was going to live long enough to have another meeting - she looked so sick. There was NO mistaking this illness. When the girls basketball team suddenly got sick and couldn't walk, let alone play basketball, that's fairly noticeable - except to the CDC. Oh yeah, forgot. All the girls must have been under some sort of " stress " simultaneously. Truckee Wolverines losing streak perhaps? - _________________________________________________ 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 April 21, 2006 Report Share Posted April 21, 2006 Carole & Simon wrote: > Hi, here is a url for this story. > > http://www.latimes.com/news/printedition/la-sci-fatigue21apr21,0,7025295.story > This is just another summary of the Pharmocogenics journal articles. It's in every newspaper by now, probably. A friend sent me a URL to the story in the San newspaper. -- el (andreafrankel at sbcglobal dot net) " wake now! Discover that YOU are the song that the morning brings... " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 HI Tom, I'm inclined to wonder too. From what I understand from these articles the general population in Kansas was 'rung up' and asked 'how they were' and from that they extrapolated people who had ME. Seems a bit weird. It specifically says that they didn't look at patients who were already diagnosed and in clinics. So does that mean there were a whole load of individuals with ME hanging around in Witchita or wherever, never having been to a doc/diagnosed/or complained about feeling dreadful and just waiting for the day the CDC would ring them up and ask how they were? And all the preliminaries carried out by 'phone too? Is this usual practise for good science? Btw the last question is not rhetorical - can someone actually tell me if this is good practise? Rosie Sorry to be such a killjoy, but the LA Times article has another red flag for me. Only 16% of the people with CFS had been diagnosed. I know that I was so sick when I first came down with ME/CFIDS that I could not have gone on with my life until someone contacted me at random and informed me that I had CFS. It did take several months for me to get the diagnosis of ME/CFIDS (in 1991) but I went to a number of doctors during that period and could not believe my ears when they told me they couldn't find anything wrong with me after I explained to them how sick I was. I looked sick too. I was waking up constantly through the night and dragging my half dead body around during the day. I have my doubts that the CFS patients in this study have the same illness that I have. Tom 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 April 22, 2006 Report Share Posted April 22, 2006 I think this is really valid concern - its something that really worries me. Like Tom and I'm sure most of the people on this list, as soon as I got sick I immediately went to a doctor. OF course some we know went to the wrong doctior or doctors, money ran out - whatever and that was their problem. THis may not have been the wealthiest population either - not the yuppies. The big question I have is how many never saw a doctor? In this day and age and particularly in the US you would have thought a much more sizeable number would have been diagnosed with CFS. To really scare you - reported that Nisenbaum's similar type of community study found that about 70% of the patients recruited this way no longer met the CDC criteria for CFS after three years. THat doesnt sound like the CFS we know. Also most (77%) had a gradual onset,. In a study he did also found mnore gradual onset; and 65% had seen a physician and only 9% had been diagnosed. It sounds like a differnet set; , however, suggested that that the ethnic minorities in his sample might be more functionally impaired than the white Caucasians normally diagnosed with CFS. I think the WIchita survey is mostly white (?). THeres obviously different readings of this. It may be that the CDC is picking up milder cases of CFS? It is a big question - a huge question mark hanging over these studies - I think anyway. It would be great to have 's take on them. Rosie <rosiecox@...> wrote: HI Tom, I'm inclined to wonder too. From what I understand from these articles the general population in Kansas was 'rung up' and asked 'how they were' and from that they extrapolated people who had ME. Seems a bit weird. It specifically says that they didn't look at patients who were already diagnosed and in clinics. So does that mean there were a whole load of individuals with ME hanging around in Witchita or wherever, never having been to a doc/diagnosed/or complained about feeling dreadful and just waiting for the day the CDC would ring them up and ask how they were? And all the preliminaries carried out by 'phone too? Is this usual practise for good science? Btw the last question is not rhetorical - can someone actually tell me if this is good practise? Rosie Sorry to be such a killjoy, but the LA Times article has another red flag for me. Only 16% of the people with CFS had been diagnosed. I know that I was so sick when I first came down with ME/CFIDS that I could not have gone on with my life until someone contacted me at random and informed me that I had CFS. It did take several months for me to get the diagnosis of ME/CFIDS (in 1991) but I went to a number of doctors during that period and could not believe my ears when they told me they couldn't find anything wrong with me after I explained to them how sick I was. I looked sick too. I was waking up constantly through the night and dragging my half dead body around during the day. I have my doubts that the CFS patients in this study have the same illness that I have. Tom 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 April 22, 2006 Report Share Posted April 22, 2006 The CDC cannot assert " this is the first credible evidence... " without the implication that all prior evidence is totally lacking in credibility. Does anyone here believe that ALL the research and documented immunological abnormalities that has been done before completely failed to establish any biological basis for Chronic Fatigue Syndrome? - ------ http://www.cdc.gov/od/oc/media/transcripts/t060420.htm Press Briefing on Chronic Fatigue Syndrome Date Thursday, April 20, 2006 MR. SKINNER: Thank you for joining us today for this conference call where we're going to be updating you all on some important research that we're publishing in a journal on chronic fatigue syndrome. With us today is the director of the CDC, Dr. Gerberding, and two of our principle chronic fatigue syndrome researchers here at CDC, Dr. Reeves and Dr. Suzanne Vernon. To start the call, I'd like for the director of the CDC, Dr. Gerberding, to talk a little bit about CDC's work around genomics, why it's important, and what we're doing here at CDC with genomics. You'll find later, in talking with Dr. Reeves and Dr. Vernon, that genomics played a pretty important role in this particular study that they're going to be talking about, and this is just one of a number of examples of important research going on at CDC around genomics and the role that it has in health. And so Dr. Gerberding is going to spend a few moments, right now, just speaking about the big picture here, when it comes to CDC's work and genomics, and how important it is. So Dr. Gerberding, I'll turn it over to you. DR. GERBERDING: Thank you. Can you hear me okay? Tom? MR. SKINNER: Yes. DR. GERBERDING: Thank you. I'm delighted to have a chance to introduce to you Dr. Reeves and Dr. Vernon, who will be presenting the details of their work that's just been published. But I wanted to frame this in three ways. First of all, this is very exciting research in the field of chronic fatigue syndrome. It really is the first credible evidence of a biological basis for chronic fatigue syndrome, that's come out in 14 articles, simultaneously, in the journal Pharmacogenomics. And I think it really reflects a remarkable confluence of a number of scientific advances really coming to bear on a problem of greatimportance to many people around the United States and one that's had controversies in the past. [continues...] ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 On Apr 21, 2006, at 12:43 PM, 2276@... wrote: > I'm in LA so not sure if this newspaper goes out anywhere else; but > there > was a great article in it (front page!!) in which it discussed how > bebilitating the illness is; how there are 4 sub-groups who have > it; how it can be worse > than those with AIDS or on chemo, the researchers also identified > many genes > which would likely lead to MUCH better treatments in the future. > Its in the > April 21st issue (friday). It should be online at some point but > if not I > could scan it if no one can find it anywhere else. It is a must > read and > something one would really want to share with their family and > friends, > especially the skeptics. Anyone with an LA Times online subscription who can go grab a copy of this article and e-mail it to the list? My mom reads the LAT. I'd love to see what's she learned today....<g> Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 Hi Sara. Here's a link to the article: > > http://www.latimes.com/news/printedition/la-sci- fatigue21apr21,0,7025295.story Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 Hello, Here are the comments of an ME advocate on quotes from the article: Re: LA Times article I could fertilize my gardens for a decade with this line, if the source was organic, but unfortunately, it is filled with toxic waste: >> " This is the first credible evidence for a biological basis " for the syndrome, said CDC Director Dr. L. Gerberding.<< And then there's this one too, that always makes me want slap them right in the face with a petri dish full of 37 kd Rnase-L wrapped around a live colony of HHV-6, and plaster it on with a hypoperfused SPECT film!: >>The findings will provide immediate help in diagnosing the disorder, which often puzzles physicians because of the broad spectrum of symptoms and the absence of defining biochemical markers.< < ANd though he got at least part of it right, he was just told that Casey Fero died of CFS, and he knows damn well M.E. experts in UK know patients die of sudden heart stoppage: >> " They are as impaired as people with multiple sclerosis or AIDS or who are undergoing chemotherapy for cancer, " Reeves said. " They don't die, but they are severely debilitated. " << Du Pre Website: http://www.angelfire.com/poetry/soareagle/index.html " By words the mind is winged. " Aristophanes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 I was very much bothered by that statement also. Bad publicity if you ask me.But what as patients can we do about it. Gail erikmoldwarrior wrote: > The CDC cannot assert " this is the first credible evidence... " > without the implication that all prior evidence is totally lacking > in credibility. > > Does anyone here believe that ALL the research and documented > immunological abnormalities that has been done before completely > failed to establish any biological basis for Chronic Fatigue > Syndrome? > - > > > > ------ > http://www.cdc.gov/od/oc/media/transcripts/t060420.htm > > Press Briefing on Chronic Fatigue Syndrome > Date Thursday, April 20, 2006 > > MR. SKINNER: Thank you for joining us today for this conference call > where we're going to be updating you all on some important research > that we're publishing in a journal on chronic fatigue syndrome. > > With us today is the director of the CDC, Dr. Gerberding, and > two of our principle chronic fatigue syndrome researchers here at > CDC, Dr. Reeves and Dr. Suzanne Vernon. > > To start the call, I'd like for the director of the CDC, Dr. > Gerberding, to talk a little bit about CDC's work around genomics, > why it's important, and what we're doing here at CDC with genomics. > > You'll find later, in talking with Dr. Reeves and Dr. Vernon, that > genomics played a pretty important role in this particular study > that they're going to be talking about, and this is just one of a > number of examples of important research going on at CDC around > genomics and the role that it has in health. > > And so Dr. Gerberding is going to spend a few moments, right now, > just speaking about the big picture here, when it comes to CDC's > work and genomics, and how important it is. > > So Dr. Gerberding, I'll turn it over to you. > > DR. GERBERDING: Thank you. Can you hear me okay? Tom? > > MR. SKINNER: Yes. > > DR. GERBERDING: Thank you. I'm delighted to have a chance to > introduce to > you Dr. Reeves and Dr. Vernon, who will be presenting the details of > their > work that's just been published. > > But I wanted to frame this in three ways. First of all, this is very > exciting research in the field of chronic fatigue syndrome. It > really is the > first credible evidence of a biological basis for chronic fatigue > syndrome, that's come out in 14 articles, simultaneously, in the > journal Pharmacogenomics. And I think it really reflects a > remarkable confluence of a number of scientific advances really > coming to bear on a problem of greatimportance to many people around > the United States and one that's had > controversies in the past. > > [continues...] > > ----- > > > > > > 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 April 22, 2006 Report Share Posted April 22, 2006 I was very much bothered by that statement also. Bad publicity if you ask me.But what as patients can we do about it. Gail erikmoldwarrior wrote: > The CDC cannot assert " this is the first credible evidence... " > without the implication that all prior evidence is totally lacking > in credibility. > > Does anyone here believe that ALL the research and documented > immunological abnormalities that has been done before completely > failed to establish any biological basis for Chronic Fatigue > Syndrome? > - > > > > ------ > http://www.cdc.gov/od/oc/media/transcripts/t060420.htm > > Press Briefing on Chronic Fatigue Syndrome > Date Thursday, April 20, 2006 > > MR. SKINNER: Thank you for joining us today for this conference call > where we're going to be updating you all on some important research > that we're publishing in a journal on chronic fatigue syndrome. > > With us today is the director of the CDC, Dr. Gerberding, and > two of our principle chronic fatigue syndrome researchers here at > CDC, Dr. Reeves and Dr. Suzanne Vernon. > > To start the call, I'd like for the director of the CDC, Dr. > Gerberding, to talk a little bit about CDC's work around genomics, > why it's important, and what we're doing here at CDC with genomics. > > You'll find later, in talking with Dr. Reeves and Dr. Vernon, that > genomics played a pretty important role in this particular study > that they're going to be talking about, and this is just one of a > number of examples of important research going on at CDC around > genomics and the role that it has in health. > > And so Dr. Gerberding is going to spend a few moments, right now, > just speaking about the big picture here, when it comes to CDC's > work and genomics, and how important it is. > > So Dr. Gerberding, I'll turn it over to you. > > DR. GERBERDING: Thank you. Can you hear me okay? Tom? > > MR. SKINNER: Yes. > > DR. GERBERDING: Thank you. I'm delighted to have a chance to > introduce to > you Dr. Reeves and Dr. Vernon, who will be presenting the details of > their > work that's just been published. > > But I wanted to frame this in three ways. First of all, this is very > exciting research in the field of chronic fatigue syndrome. It > really is the > first credible evidence of a biological basis for chronic fatigue > syndrome, that's come out in 14 articles, simultaneously, in the > journal Pharmacogenomics. And I think it really reflects a > remarkable confluence of a number of scientific advances really > coming to bear on a problem of greatimportance to many people around > the United States and one that's had > controversies in the past. > > [continues...] > > ----- > > > > > > 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 April 22, 2006 Report Share Posted April 22, 2006 That link did not work. Here's the URL that I used. http://www.latimes.com/search/dispatcher.front? Query=cfs & target=blendedsearch & first-page-size=5 Lynn > > Hi Sara. > > Here's a link to the article: > > > > > http://www.latimes.com/news/printedition/la-sci- > fatigue21apr21,0,7025295.story > > > Tom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Interesting that Reeves actually thinks what we're talking about as a likely weakness of the research is a comparative strength. Below is what he said about this research compared to the UK gene research. Hmmm, I think I'll take the biases that come from research performed on patients who are profoundly ill and already in treatment, than the biases from researching patients who likely who don't even have true CFIDS: " There is one major difference between this study and any other study that we are aware of. For example, the U.K. study involved patients identified because they were attending a tertiary care clinic. They were attending a specialty clinic for chronic fatigue syndrome. Our study identified people with the illness, who we found in a survey of a quarter of the population of Wichita, Kansas. So we surveyed the population of an entire city. Fewer than 16 percent that had been diagnosed ever or treated for CFS. So the study is unique in that it is free of the biases that inevitably occur when only people who have already attended tertiary care clinics are involved. " http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0604d & L=co-cure & T=0 & P=317 > > > > HI Tom, > > I'm inclined to wonder too. From what I understand from these articles > the general population in Kansas was 'rung up' and asked 'how they were' > and from that they extrapolated people who had ME. Seems a bit weird. > It specifically says that they didn't look at patients who were already > diagnosed and in clinics. So does that mean there were a whole load of > individuals with ME hanging around in Witchita or wherever, never having > been to a doc/diagnosed/or complained about feeling dreadful and just > waiting for the day the CDC would ring them up and ask how they were? > And all the preliminaries carried out by 'phone too? Is this usual > practise for good science? Btw the last question is not rhetorical - > can someone actually tell me if this is good practise? > Rosie > > > > Sorry to be such a killjoy, but the LA Times article has another red > flag for me. > > Only 16% of the people with CFS had been diagnosed. > > I know that I was so sick when I first came down with ME/CFIDS that I > could not have gone on with my life until someone contacted me at > random and informed me that I had CFS. > > It did take several months for me to get the diagnosis of ME/CFIDS > (in 1991) but I went to a number of doctors during that period and > could not believe my ears when they told me they couldn't find > anything wrong with me after I explained to them how sick I was. I > looked sick too. I was waking up constantly through the night and > dragging my half dead body around during the day. > > I have my doubts that the CFS patients in this study have the same > illness that I have. > > Tom > > > > > > > > > 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 April 24, 2006 Report Share Posted April 24, 2006 cort johnson wrote: > OF course some we know went to the wrong doctior or doctors, money ran out - whatever and that was their problem. THis may not have been the wealthiest population either - not the yuppies.< If you go through the list of Incline Village survivors professions, you might notice a peculiar thing: There were no Yuppies! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 http://www.cfsresearch.org/cfs/conferences/16.htm This is part of my report on the 2004 AACFS conference. It is Dr. Reeves' statements summarizing the Wichita epidemiology study. I hope this will clear up some misconceptions about the study. It was an amazing study that made many things about cfs clearer. Please read this carefully. Do not reproduce this without my permission. - a Carnes " C. Reeves, MD from the CDC began his presentation of their new epidemiology studies by stating clearly that the " fatigue " in chronic FATIGUE syndrome is not just " tired. " It is a fatigue not relieved by rest and includes hurting all over. He then moved on to some startling new information. The CDC study found 235 cases of CFS per 100,000 in their Wichita study. Women are more likely than men to have it, but CFS is more common than breast cancer among women. These details are familiar, but here is a list of surprises. Rural rates of CFS are twice those of urban areas Minorities have the highest risk Lower socioeconomic groups have a much greater risk Eighty percent have a GRADUAL onset No regional differences in the disease are manifest Median duration of the illness is 2-7 years Only 16% of the cases uncovered in the survey are diagnosed Unemployed or cases on disablity total 25% Level of disability equals that of patients with major health problems such as COPD The cost in lost productivity ($9 billion) is equal to WalMart's annual profit margin, or the cost of the hurricane in Miami in 2004. The cost to a family with CFS for one year is $20,000. This includes the cost of treatment. In the UK it is costing the government $4 billion to treat CFS patients. The CDC is working to develop a network system to create more clinical studies of CFS. The next epidemiological study will be in the Atlanta, Georgia area, and will include both urban and rural counties. The location in the CDC area will enable them to do the complex studies efficiently. " > > Interesting that Reeves actually thinks what we're talking about as a > likely weakness of the research is a comparative strength. Below is > what he said about this research compared to the UK gene research. > Hmmm, I think I'll take the biases that come from research performed > on patients who are profoundly ill and already in treatment, than the > biases from researching patients who likely who don't even have true > CFIDS: > > > " There is one major difference between this study and any other study > that we are aware of. > > For example, the U.K. study involved patients identified because they > were attending a tertiary care clinic. > > They were attending a specialty clinic for chronic fatigue syndrome. > Our study identified people with the illness, who we found in a survey > of a quarter of the population of Wichita, Kansas. > > So we surveyed the population of an entire city. Fewer than 16 percent > that had been diagnosed ever or treated for CFS. So the study is > unique in that it is free of the biases that inevitably occur when > only people who have already attended tertiary care clinics are involved. " > > http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0604d & L=co- cure & T=0 & P=317 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 > This is part of my report on the 2004 AACFS conference. It is Dr. > Reeves' statements summarizing the Wichita epidemiology study. I hope > this will clear up some misconceptions about the study. It was an > amazing study that made many things about cfs clearer. >Eighty percent have a GRADUAL onset >Median duration of the illness is 2-7 years >Only 16% of the cases uncovered in the survey are diagnosed >Unemployed or cases on disablity total 25% Hi a. The excerpts from your report above are among the things that trouble me about this study. I think that the CFS that this report adresses is a different illness from ME/CFIDS or an intentional attempt to blur the distinction between chronic fatigue and ME/CFIDS. We know that the Wessely camp has been blatantly doing this in the UK and we know that they have trying to export their dishonesty to the US for years. I don't doubt that the findings reported in this study are correct, but the population that they captured has a different illness from those of us who did not have to be " uncovered " by a study. We knew we were extremely sick and were searching desperately for help. That 84% did not know they had CFS is a dead giveaway that something is not right here. As for the median duration being 2-7 years, I didn't start to feel any better for at least 5 years and I felt really bad. A few years ago Dr. Cheney checked up on as many of his original Incline Village patients as he could find and found that none of them were substatially recovered (not sure of his exact description). We can call it all CFS and divide the people into different subgroups, I'm not that concerned about what they call it as long as they understand the real nature of the illness they are dealing with. What I have read so far gives me no confidence that that is the case here. Watching how the CDC has dealt with this illness for the last 20+ years does not make me inclined to give them the benefit of the doubt either. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 " Median duration " of two to seven years did NOT mean these folks were recovered. It meant at the time they got the phone call they had been sick 2-7 years. I'm telling you this report is about the ONLY good thing to come out of the CDC. Don't knock it. Did you notice that most of us sickies are " minorities " not yuppie white women? Did you notice that our disability is about as bad as disability gets? Did you notice all the comparisions to financial loss to the country because of disability with cfs? We need to be writing thank you notes to Dr. Reeves for this one - not criticizing. Let me explain again, if they had used a survey of those of us who have been all over the country frantically trying to get well, guess who would have been the " majority? " Yep, yuppie white women with rich husbands. Now don't ask me about what they are doing with their studies of this population now... a Carnes > > > This is part of my report on the 2004 AACFS conference. It is Dr. > > Reeves' statements summarizing the Wichita epidemiology study. I hope > > this will clear up some misconceptions about the study. It was an > > amazing study that made many things about cfs clearer. > > >Eighty percent have a GRADUAL onset > > >Median duration of the illness is 2-7 years > > >Only 16% of the cases uncovered in the survey are diagnosed > > >Unemployed or cases on disablity total 25% > > Hi a. > > The excerpts from your report above are among the things that trouble > me about this study. I think that the CFS that this report adresses is > a different illness from ME/CFIDS or an intentional attempt to blur the > distinction between chronic fatigue and ME/CFIDS. We know that the > Wessely camp has been blatantly doing this in the UK and we know that > they have trying to export their dishonesty to the US for years. > > I don't doubt that the findings reported in this study are correct, but > the population that they captured has a different illness from those of > us who did not have to be " uncovered " by a study. We knew we were > extremely sick and were searching desperately for help. That 84% did > not know they had CFS is a dead giveaway that something is not right > here. > > As for the median duration being 2-7 years, I didn't start to feel any > better for at least 5 years and I felt really bad. A few years ago Dr. > Cheney checked up on as many of his original Incline Village patients > as he could find and found that none of them were substatially > recovered (not sure of his exact description). > > We can call it all CFS and divide the people into different subgroups, > I'm not that concerned about what they call it as long as they > understand the real nature of the illness they are dealing with. What > I have read so far gives me no confidence that that is the case here. > Watching how the CDC has dealt with this illness for the last 20+ years > does not make me inclined to give them the benefit of the doubt either. > > Tom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Hi, a. I'm with you on this! And I also think we should keep our focus on the fact that two of the papers dealt with polymorphisms. In my opinion, this is the real future of CFS research. It will point us to the root causes and offer the potential for real CURES. (By cures, I mean compensating for the polymorphisms effectively using supplements, so that the vicious circles are broken and the symptoms go away. I don't mean correcting the polymorphisms, though I think stem cells, even perhaps endogenous or umbilical stem cells, might have the potential to do even this.) And I think that polymorphism studies will also define the subsets in the CFS population. I only hope that they continue with this part of it, and go on to look at the polymorphisms in enzymes and other proteins associated with the sulfur metabolism and the associated folate metabolism and the biopterin cycle, the detox system, the antioxidant system, and the immune system. These are the other systems involved in the front end of the pathogenesis of CFS. As I've been writing for some time, in order for polymorphisms to be relevant to determining whether a person is more likely than the general population to develop CFS, they must be located in the enzymes involved in the early part of the pathogenesis. Otherwise they will not be accessed during the Go-no go stage of the action. The CDC collaborators focused on the polymorphisms in the stress response and neurotransmitter systems. That was great, because the stress response systems are the earliest systems accessed in the pathogenesis of many of the cases, in my opinion. This happens well before the immune system involvement in many cases, which is the first clue that the sudden onset people have that they are becoming ill. By that point, I believe that the die has already been cast in many cases, because I believe that glutathione is already depleted at that point, and the person is therefore already " set up " for viral reactivation and cell- mediated immune dysfunction. By that time, it's a foregone conclusion that the person will develop CFS. I wasn't thrilled with everything Bill Reeves and Gerberding said in the news conference, but this really is the best stuff that the CDC has done so far on CFS, and at least the polymorphism work is going in the right direction, in my opinion. And did you notice that Gerberding said that they think they can use the same approach for autism? Wow! I think they are going to be following Amy Yasko's tracks, and this can't help but benefit CFS research, too, because we're talking about the same polymorphisms! It is also going to cause a crash collision with the part of the CDC that is denying any involvement of thimerosol (ethylmercury containing preservative in the vaccines) in the pathogenesis of autism. This will be very interesting to watch! I do intend to write them again, and to say some good things to them, as well as to urge them again to look at these other polymorphisms. And a, I know how strongly you feel about the need to look into infectious causes. I agree with that, too. I also think that studying the immune system polymorphisms will help a great deal in figuring out why some people seem to be more vulnerable to infections than others. Rich I'm telling you this report is about the ONLY good > thing to come out of the CDC. Don't knock it. We need to be writing thank you notes > to Dr. Reeves for this one - not criticizing. > a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 I guess I am simply not as optimistic as you are about this work. I'm more interested in this kind of work: 1: J Biol Chem. 2006 Apr 18; [Epub ahead of print] Related Articles, Links Click here to read Hepatitis B virus capsid-like particles can display the complete, dimeric outer surface protein C (OspC) and stimulate production of protective antibody responses against Borrelia burgdorferi infection. Skamel C, Ploss M, Bottcher B, Stehle T, Wallich R, Simon MM, Nassal M. Internal Medicine II / Molecular Biology, University Hospital Freiburg, University Hospital, Freiburg D-79106. Hepatitis B virus (HBV) capsid-like particles (CLPs), icosahedral assemblies formed by 90 or 120 core protein dimers, hold promise as immune-enhancing vaccine carrier for heterologous antigens. Insertions into the immunodominant c/e1 B cell epitope, a surface-exposed loop, are especially immunogenic. However, display of whole proteins, desirable to induce multispecific, and possibly neutralizing antibody responses, can be restrained by an unsuitable structure of the foreign protein and by its propensity to undergo homomeric interactions. Here we analyzed CLP formation by core fusions with two distinct variants of the dimeric outer surface lipoprotein C (OspC) of the Lyme disease agent Borrelia burgdorferi. Although the topology of the termini in the OspC dimer does not match that of the insertion sites in the carrier dimer, both fusions, coreOspCa and coreOspCb, efficiently formed stable CLPs. Electron cryo microscopy clearly revealed the surface disposition of the OspC domains, possibly with OspC dimerization occurring across different core protein dimers. In mice, both CLP preparations induced high-titered antibody responses against the homologous OspC variant, however with cross-reactivity against the other. Importantly, both conferred protection to mice challenged with B. burgdorferi. These data show the principal applicability of HBV CLPs for the display of dimeric proteins, demonstrate the presence in OspC of hitherto uncharacterized epitopes, and suggest that OspC, despite its genetic variability, may be a valid vaccine candidate. --- Or Kathleen's posting on sci-med recently noting that: " Exposure to Lyme results in immune incompetence to fungal infections. You end up tired because your red blood cells no longer deliver oxygen as well as they did. " And then citing her pubmed search on lipoproteins and TLR-2's (toll-like receptor 2) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch & db=pubmed & details_t\ erm=%28%28%22lipoproteins%22%5BTIAB%5D%20NOT%20Medline%5BSB%5D%29%20OR%20%22lipo\ proteins%22%5BMeSH%20Terms%5D%20OR%20lipoprotein%5BText%20Word%5D%29%20AND%20TLR\ -2%5BAll%20Fields%5D She is really really smart, aside from any other issues she may have, and has keyed into a lot of stuff that nobody else is saying or understanding. I'd rather they look at the inflammatory lipoproteins that certain organisms share, and neutralize those, than look at polymorphisms. Although I do think certain polymorphisms will show cross vulnerability to sets of organisms, both autism and CFS are wastebasket diagnoses that involve multiple issues. Some autistic kids must eat a very strict specific carb diet w/o any casein glutein and other stuff. Others don't benefit that much from diet and chelation is the main thing. There are multiple causes. This is imo where the funding is but it doesn't take into account infection at all. It just calls it " stress " . I don't think folks like Nobel Prize winner Lederberg, or Ewald or others, would agree that polymorphisms is the way to go. You need to see first why and how the body is being hijacked by little genius microbes that have been perfecting their technique for a much longer evolutionary time than we have. > > I'm telling you this report is about the ONLY good > > thing to come out of the CDC. Don't knock it. > > We need to be writing thank you notes > > to Dr. Reeves for this one - not criticizing. > > > a Carnes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Hi, . In defense of Bill Reeves, one of the main missions of the CDC is epidemiology. They are charged with determining how many people actually have a disease, and how it's distributed among various population groups. If you want to do good epidemiology, you have to survey the entire population in a random way, not just rely on counting people who show up at clinics, especially tertiary clinics. The agency of the U.S. government that is charged with developing a thorough understanding of the disease is the NIH. At this point, I would say that the CDC is carrying out its responsibilities vis a vis CFS more expeditiously than is the NIH. Rich > > Interesting that Reeves actually thinks what we're talking about as a > likely weakness of the research is a comparative strength. Below is > what he said about this research compared to the UK gene research. > Hmmm, I think I'll take the biases that come from research performed > on patients who are profoundly ill and already in treatment, than the > biases from researching patients who likely who don't even have true > CFIDS: > > > " There is one major difference between this study and any other study > that we are aware of. > > For example, the U.K. study involved patients identified because they > were attending a tertiary care clinic. > > They were attending a specialty clinic for chronic fatigue syndrome. > Our study identified people with the illness, who we found in a survey > of a quarter of the population of Wichita, Kansas. > > So we surveyed the population of an entire city. Fewer than 16 percent > that had been diagnosed ever or treated for CFS. So the study is > unique in that it is free of the biases that inevitably occur when > only people who have already attended tertiary care clinics are involved. " > > http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0604d & L=co- cure & T=0 & P=317 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Hi a. Sorry about the misunderstanding about median duration, I admit that I'm not too hard to confuse. I don't know of course, but I'd guess that most of the people on this list are not yuppie white women with rich husbands. I can say with certainty that I am not;) I think that people who were about as disabled as disabled gets would have seen at least a few doctors before they threw in the towel and went home to live off of God knows who, waiting for a miracle to restore their health. Someone might even have told them about an article they had read or a report they had seen on the news about chronic fatigue syndrome during those 2-7 years. There's too much about this study that just doesn't add up. Why brush aside all other studies and thought on CFIDS as meaningless? Are Doctors Cheney, Shoemaker, Komaroff, Enlander, Klimas, Gow, De Meirleir, Lapp, Bell and all the many others who have worked so hard to unlock clues about the illness just bad scientists who wasted their time and our money? You may be right. Maybe we'll all soon be thanking God for Dr. Reeves. I'm remaining skeptical at the moment though. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Ha, ha. You had me giggling. I doubt I will be quite at the point of thanking God for Reeves any time soon. I have very mixed feelings about the CDC. I hope Rich V. is correct that their ongoing study will be useful. Trouble is I see this as a long way off whereas testing this population for Lyme is not that hard to do. So that is where I would part ways with Reeves. I find it odd that the study shows twice as many rural folks are sick, yet no one starts checking on borrelia or exposure to toxins. BTW if you go to my complete article which I did not post here you will find that Demitrak said rickettsia is found in cfs patients. Duh! Welcome to the world of ticks. They are the little critters that carry rickettsia in the US. Sp when is the CDC gonna test all those country folk for rickettsia? Would these people have gone to the doctor? I don't know. If you live on a farm or are on welfare you can sort of get along - you don't think about how you lost your big career if you just lost your job at Mc's. The disease is tricky and with 80% slow onset you might not figure anything out. You might start getting treated for RA or fibro. Or maybe you just think you are depressed. You were confused because I didn't write the median thing too clearly. I don't think the epidemiology study contradicts DeMeirleir, Cheney et al at all. Indeed, DeMeirleir was there at the AACFS conf and I expect he thought the study was great. What we all don't like is where they go next, or maybe that they are taking the long road to get there. We shall see... a > > Hi a. > > Sorry about the misunderstanding about median duration, I admit that > I'm not too hard to confuse. > > I don't know of course, but I'd guess that most of the people on this > list are not yuppie white women with rich husbands. I can say with > certainty that I am not;) > > I think that people who were about as disabled as disabled gets would > have seen at least a few doctors before they threw in the towel and > went home to live off of God knows who, waiting for a miracle to > restore their health. Someone might even have told them about an > article they had read or a report they had seen on the news about > chronic fatigue syndrome during those 2-7 years. > > There's too much about this study that just doesn't add up. Why > brush aside all other studies and thought on CFIDS as meaningless? > Are Doctors Cheney, Shoemaker, Komaroff, Enlander, Klimas, Gow, De > Meirleir, Lapp, Bell and all the many others who have worked so hard > to unlock clues about the illness just bad scientists who wasted > their time and our money? > > You may be right. Maybe we'll all soon be thanking God for Dr. > Reeves. I'm remaining skeptical at the moment though. > > Tom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 But there's already a fairly loaded use of language on his behalf at the press conference; compare his comments with Vernon's. I'm not interesting in attacking or defending Reeves, all I mean is that I'm far more interested in the results that come from the Kerr/Gow patients. If both of them manage to talk about their results without mentioning CBT, I have more trust that they are talking about the same disease I have. Not judging which is good science and which isn't, just which interests me more. > > > > Interesting that Reeves actually thinks what we're talking about > as a > > likely weakness of the research is a comparative strength. Below is > > what he said about this research compared to the UK gene research. > > Hmmm, I think I'll take the biases that come from research > performed > > on patients who are profoundly ill and already in treatment, than > the > > biases from researching patients who likely who don't even have > true > > CFIDS: > > > > > > " There is one major difference between this study and any other > study > > that we are aware of. > > > > For example, the U.K. study involved patients identified because > they > > were attending a tertiary care clinic. > > > > They were attending a specialty clinic for chronic fatigue > syndrome. > > Our study identified people with the illness, who we found in a > survey > > of a quarter of the population of Wichita, Kansas. > > > > So we surveyed the population of an entire city. Fewer than 16 > percent > > that had been diagnosed ever or treated for CFS. So the study is > > unique in that it is free of the biases that inevitably occur when > > only people who have already attended tertiary care clinics are > involved. " > > > > http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0604d & L=co- > cure & T=0 & P=317 > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.