Guest guest Posted December 19, 2006 Report Share Posted December 19, 2006 Jill McLaughlin <jillmclaughlin@...> wrote: > I'm going to the conference and think it looks good. Then I will be expecting you to repeat to them the same things you said to me. I can send them copies of your statements, if you wish. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2006 Report Share Posted December 19, 2006 jillmclaughlin@...> wrote: > > > I'm going to the conference and think it looks good. I believe that Dr. Kerr > is presenting and Dr. Chia, Dr. Carruthers from Canada, Dr. DeMerlier of > course, and a great virology session with a presentation on HHV-6 by the > HHV-6 foundation - and the pediatric definition with some preliminary > data. It covers the hard science and research quite extensively - the > behavioral realm is minimal (and no CBT!) ***No CBT?...OK, , who did you " off " to make this happen? I know given your tenacity with mold avoidance applied to discarding the bodies that they will never be found, but just who were they? ***Good work, though I am disappointed in you not doing complete work(Jill, " ...the behavorial realm is minimal " ). I can just see this being the opening for coverage from the UK, for one, focusing on these little tid bits as if they're the focus of the entire conference. *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2006 Report Share Posted December 19, 2006 " davidhall2020 " wrote: >OK, , who did you " off " to make this happen? Everyone was " wavering " about whether the illness was real. People separated into groups of either blustering denial, or stark fear of us. And then Kaplan and Holmes came - we were so hopeful.. When they bailed, saying that we were all just hysterical... Well, I don't have room here to describe it all, but everyone who was " on the fence " jumped to the " mental illness " side. All we did was " say what happened " . There was no justice to this. It just wasn't right. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Jill McLaughlin <jillmclaughlin@...> wrote: > > > , > > I'm not interested in playing games with you or ruminating on the past or who said what or obsessing about what happened in Incline Village. The past is past. Continue your undying, never-ending allegiance to CFS and Incline Village if you want but I'm not interested. Inordinate amounts of time is wasted with these distractions and do not have the time nor inclination to get dragged into these absurd debates - which you seem to thrive on. What really matters is what is happening now. Some do want to move forward. > > Jill We are indeed discussing the future. Which is your plan to " move forward " by assertions that " There is no defense or excuse " for utilization of the term CFS, that Oxford is the only real definition, and that any person who employs the term CFS is deliberately obfuscating the nature of the illness, and is working against the interests of patients. You have said these things to me, as part of you " move forward and forget the past " plan. I intend that you shall retain consistency in your views by making these points of your plan clear to conference members as well. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi Jill, I finally decided yesterday that I will not be going to the conference. Yes, I agree some of the presenters look good, perhaps better than past years. and I do have our pet theories, his being toxic mold and mine being mycoplasma and borrelia COMBINED with toxic mold. I regret that the presentation of Lyme at the Madison, WI conference included a sarcastic, tongue in check, mimimalization of the serious issue of chronic borreliosis. Those of us with cfs and fms from the south were told that we couldn't have Lyme disease as the strain of borrelia in the south is a mild illness of three weeks' duration. Never mind that I stood up to demonstrate that my entire family has Lyme, all from South Carolina ticks. But I digress. Unfortunately, I see on this year's schedule that infections in cfs is being saved for a post conference presentation. I guess this means folks who think their cfs is not caused by infection can catch an early plane out and not have to be presented with any evidence that rattles their theoretical cages. Heaven forbit they should be told to try antibiotics. I don't even see the word " Lyme " on the agenda this year. I could have missed it. But, if you take Rich V's approach and decide that people like me - with classic CFS diagnoses even to tilt table tests - are no longer in the cfs category because we now have a diagnosis that rules out cfs...I get so sick of writing this I can't even waste more time on it...then I guess they don't have to talk about borrelia at a cfs conference because no one there has borrelia. Right? Of course, right. If we could just accurately test more attendees at this conference there would probably be so few left to attend that they would have to close the IACFS and go home. We have to talk and talk and talk, not about LABELS but about CAUSES - toxic mold, mycoplasmas, borrelia, babesia, roundworms, ehrlichia, c. pneumoniae. We don't know what cfs is, let alone what to call it, until we get accurate tests and RUN THEM ON CFS PATIENTS. If you get a chance, please quote me at the conference. Your friend, a Carnes > > > , > > I'm not interested in playing games with you or ruminating on the past or > who said what or obsessing about what happened in Incline Village. The past > is past. Continue your undying, never-ending allegiance to CFS and Incline > Village if you want but I'm not interested. Inordinate amounts of time is > wasted with these distractions and do not have the time nor inclination to > get dragged into these absurd debates - which you seem to thrive on. What > really matters is what is happening now. Some do want to move forward. > > Jill > > __________________ > > > Re: IACFS conference > Tue Dec 19, 2006 8:30 am (PST) > Jill McLaughlin <jillmclaughlin@> wrote: > > I'm going to the conference and think it looks good. > > Then I will be expecting you to repeat to them the same things you > said to me. > I can send them copies of your statements, if you wish. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi, a. Well, I'll certainly miss seeing you there and talking with you this time. I do want to make it clear that what you refer to as my approach below really didn't originate with me. I'm just following the case definitions of CFS, both Fukuda et al. and the Canadian one. I wasn't involved in writing them. As I've tried to make clear before, I do care about people who have tested positively for tickborne diseases, and I do think that Lyme disease shares a lot of the same pathogenesis with CFS, for reasons I've written about before. I think our point of disagreement is over whether all CFS is Lyme disease, since I don't think that's true. I'm sorry if Borrelia is not on the program this time. I have a feeling that it will come up in the discussions, though. Often the most important things that go on at a scientific conference are not on the formal program, so don't lose heart. Merry Christmas, a! Rich > > Hi Jill, > I finally decided yesterday that I will not be going to the > conference. Yes, I agree some of the presenters look good, perhaps > better than past years. > > and I do have our pet theories, his being toxic mold and mine > being mycoplasma and borrelia COMBINED with toxic mold. > > I regret that the presentation of Lyme at the Madison, WI conference > included a sarcastic, tongue in check, mimimalization of the serious > issue of chronic borreliosis. Those of us with cfs and fms from the > south were told that we couldn't have Lyme disease as the strain of > borrelia in the south is a mild illness of three weeks' duration. > Never mind that I stood up to demonstrate that my entire family has > Lyme, all from South Carolina ticks. But I digress. > > Unfortunately, I see on this year's schedule that infections in cfs > is being saved for a post conference presentation. I guess this means > folks who think their cfs is not caused by infection can catch an > early plane out and not have to be presented with any evidence that > rattles their theoretical cages. Heaven forbit they should be told to > try antibiotics. > > I don't even see the word " Lyme " on the agenda this year. I could > have missed it. But, if you take Rich V's approach and decide that > people like me - with classic CFS diagnoses even to tilt table tests - > are no longer in the cfs category because we now have a diagnosis > that rules out cfs...I get so sick of writing this I can't even waste > more time on it...then I guess they don't have to talk about borrelia > at a cfs conference because no one there has borrelia. Right? Of > course, right. If we could just accurately test more attendees at > this conference there would probably be so few left to attend that > they would have to close the IACFS and go home. > > We have to talk and talk and talk, not about LABELS but about CAUSES - > toxic mold, mycoplasmas, borrelia, babesia, roundworms, ehrlichia, > c. pneumoniae. We don't know what cfs is, let alone what to call it, > until we get accurate tests and RUN THEM ON CFS PATIENTS. > > If you get a chance, please quote me at the conference. > > Your friend, > a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 " pjeanneus " wrote: > and I do have our pet theories, his being toxic mold and mine > being mycoplasma and borrelia COMBINED with toxic mold. a, It's funny, I suppose, but I don't think of mold as a theory. If you see an oven with the dial turned on, I guess you'd have a theory that it might be hot. But once you've leaned on it and burnt your butt, would it still be considered a theory afterwards? I consider " the mycotoxin connection " as more of an observation that hasn't had the attention it deserves. I'm still looking to find a CFSer who ISN'T being affected by these toxins, and because of the strange way in which the " effect " presents, very few people consciously implicate mold or do much in the way of pro-actively staying out of range. Might just pay off. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 What do you mean a post conference presentation? Is it part of the conference. Interesting that the one thing many of us have in common, infections, gets added as a tag on. Sheeesh. Gail pjeanneus wrote: > > Hi Jill, > I finally decided yesterday that I will not be going to the > conference. Yes, I agree some of the presenters look good, perhaps > better than past years. > > and I do have our pet theories, his being toxic mold and mine > being mycoplasma and borrelia COMBINED with toxic mold. > > I regret that the presentation of Lyme at the Madison, WI conference > included a sarcastic, tongue in check, mimimalization of the serious > issue of chronic borreliosis. Those of us with cfs and fms from the > south were told that we couldn't have Lyme disease as the strain of > borrelia in the south is a mild illness of three weeks' duration. > Never mind that I stood up to demonstrate that my entire family has > Lyme, all from South Carolina ticks. But I digress. > > Unfortunately, I see on this year's schedule that infections in cfs > is being saved for a post conference presentation. I guess this means > folks who think their cfs is not caused by infection can catch an > early plane out and not have to be presented with any evidence that > rattles their theoretical cages. Heaven forbit they should be told to > try antibiotics. > > I don't even see the word " Lyme " on the agenda this year. I could > have missed it. But, if you take Rich V's approach and decide that > people like me - with classic CFS diagnoses even to tilt table tests - > are no longer in the cfs category because we now have a diagnosis > that rules out cfs...I get so sick of writing this I can't even waste > more time on it...then I guess they don't have to talk about borrelia > at a cfs conference because no one there has borrelia. Right? Of > course, right. If we could just accurately test more attendees at > this conference there would probably be so few left to attend that > they would have to close the IACFS and go home. > > We have to talk and talk and talk, not about LABELS but about CAUSES - > toxic mold, mycoplasmas, borrelia, babesia, roundworms, ehrlichia, > c. pneumoniae. We don't know what cfs is, let alone what to call it, > until we get accurate tests and RUN THEM ON CFS PATIENTS. > > If you get a chance, please quote me at the conference. > > Your friend, > a Carnes > > > > > > > , > > > > I'm not interested in playing games with you or ruminating on the > past or > > who said what or obsessing about what happened in Incline Village. > The past > > is past. Continue your undying, never-ending allegiance to CFS and > Incline > > Village if you want but I'm not interested. Inordinate amounts of > time is > > wasted with these distractions and do not have the time nor > inclination to > > get dragged into these absurd debates - which you seem to thrive > on. What > > really matters is what is happening now. Some do want to move > forward. > > > > Jill > > > > __________________ > > > > > > Re: IACFS conference > > Tue Dec 19, 2006 8:30 am (PST) > > Jill McLaughlin <jillmclaughlin@> wrote: > > > I'm going to the conference and think it looks good. > > > > Then I will be expecting you to repeat to them the same things you > > said to me. > > I can send them copies of your statements, if you wish. > > - > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 , I used the word " theory " in the strong scientific sense of the word = as close to proven as you can get in science. a > " pjeanneus " wrote: > > > and I do have our pet theories, his being toxic mold and mine > > being mycoplasma and borrelia COMBINED with toxic mold. > > > > a, > It's funny, I suppose, but I don't think of mold as a theory. > > If you see an oven with the dial turned on, I guess you'd have a > theory that it might be hot. > But once you've leaned on it and burnt your butt, would it still be > considered a theory afterwards? > > I consider " the mycotoxin connection " as more of an observation that > hasn't had the attention it deserves. > > I'm still looking to find a CFSer who ISN'T being affected by these > toxins, and because of the strange way in which the " effect " > presents, very few people consciously implicate mold or do much in > the way of pro-actively staying out of range. > > Might just pay off. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi Gail, If you look over the schedule there are sessions on viruses and cfs, and there are some genetics and proteomics sessions. But at 4:00 pm Sunday there is a Post Conference Workshop " Infections in CFS. " Even this post session is dominated by antiviral or immunomodulatory strategies. " Dr. Garth Nicolson is listed - he is the only one who has focused on bacterial infections in cfs. I see no mention of Lyme at all. Indeed, in 2004 the only reason Lyme and antibiotics were mentioned is because I put pressure on to get Richie Shoemaker and Dr. Trevor Marshall on the program. I think out of that the CDC decided to address Lyme and talk about how it didn't exist in the south. I believe they also mentioned that most cfs patients test negative, not bothering to mention that most LYME patients test negative as the tests are no good. It doesn't seem to matter how many of us patients over the years have reported improvement on antibiotics or tested positive for various bacteria, it is like we are ghosts standing in the room, never being heard. I for one am tired of the whole thing. I can think of a lot nicer way to spend a few days mid January. Maybe I should go climb Mt. Hood away from the toxic mold. a Carnes > > What do you mean a post conference presentation? > Is it part of the conference. > > Interesting that the one thing many of us have in common, infections, > gets added as a tag on. > Sheeesh. > Gail > > pjeanneus wrote: > > > > Hi Jill, > > I finally decided yesterday that I will not be going to the > > conference. Yes, I agree some of the presenters look good, perhaps > > better than past years. > > > > and I do have our pet theories, his being toxic mold and mine > > being mycoplasma and borrelia COMBINED with toxic mold. > > > > I regret that the presentation of Lyme at the Madison, WI conference > > included a sarcastic, tongue in check, mimimalization of the serious > > issue of chronic borreliosis. Those of us with cfs and fms from the > > south were told that we couldn't have Lyme disease as the strain of > > borrelia in the south is a mild illness of three weeks' duration. > > Never mind that I stood up to demonstrate that my entire family has > > Lyme, all from South Carolina ticks. But I digress. > > > > Unfortunately, I see on this year's schedule that infections in cfs > > is being saved for a post conference presentation. I guess this means > > folks who think their cfs is not caused by infection can catch an > > early plane out and not have to be presented with any evidence that > > rattles their theoretical cages. Heaven forbit they should be told to > > try antibiotics. > > > > I don't even see the word " Lyme " on the agenda this year. I could > > have missed it. But, if you take Rich V's approach and decide that > > people like me - with classic CFS diagnoses even to tilt table tests - > > are no longer in the cfs category because we now have a diagnosis > > that rules out cfs...I get so sick of writing this I can't even waste > > more time on it...then I guess they don't have to talk about borrelia > > at a cfs conference because no one there has borrelia. Right? Of > > course, right. If we could just accurately test more attendees at > > this conference there would probably be so few left to attend that > > they would have to close the IACFS and go home. > > > > We have to talk and talk and talk, not about LABELS but about CAUSES - > > toxic mold, mycoplasmas, borrelia, babesia, roundworms, ehrlichia, > > c. pneumoniae. We don't know what cfs is, let alone what to call it, > > until we get accurate tests and RUN THEM ON CFS PATIENTS. > > > > If you get a chance, please quote me at the conference. > > > > Your friend, > > a Carnes > > > > > > > > > > > , > > > > > > I'm not interested in playing games with you or ruminating on the > > past or > > > who said what or obsessing about what happened in Incline Village. > > The past > > > is past. Continue your undying, never-ending allegiance to CFS and > > Incline > > > Village if you want but I'm not interested. Inordinate amounts of > > time is > > > wasted with these distractions and do not have the time nor > > inclination to > > > get dragged into these absurd debates - which you seem to thrive > > on. What > > > really matters is what is happening now. Some do want to move > > forward. > > > > > > Jill > > > > > > __________________ > > > > > > > > > Re: IACFS conference > > > Tue Dec 19, 2006 8:30 am (PST) > > > Jill McLaughlin <jillmclaughlin@> wrote: > > > > I'm going to the conference and think it looks good. > > > > > > Then I will be expecting you to repeat to them the same things you > > > said to me. > > > I can send them copies of your statements, if you wish. > > > - > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 " pjeanneus " wrote: > > , I used the word " theory " in the strong scientific sense of the word = as close to proven as you can get in science. > a Ahh, thank you. Figured it might be so, but after so many years of hearing about " 's mold theory " , it's amazing how the slightest element of not being proven can be magnified into probable cause for total disbelief with a little emphasis on " Just a theory " . Got some new additions to the " Incline Mold Tour " and WOW, what a whup job the latest one is! I wish Dr Cheney were here. I'd drag his butt around town and show him how things have " improved " since he left. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 a-I can't agree w/ your statement below any more strongly. After 20+ years of conferences, breakthroughs, etc. I have come to believe that the only way we are going to make any progress toward a treatment is to fund researchers on our own-I mean us patients. The CDC is still doing prevalence studies and there are various studies going on that only address one or two symptoms, like the Epotein study. These studies are better than nothing, but I think the real breakthrough will come from a researcher who is able to patent a treatment-i.e., someone who is willing to devote the time and money necessary w/ the hope of 'striking it rich' via their patent. I am all for this way of finding a treatment, that is the way things work in the U.S. and I would be willing to pay whatever it takes to get back to at least 80-90%. Mike C In , " pjeanneus " <pj7@...> wrote: > I for one am tired of the whole thing. I can think of a lot nicer way > to spend a few days mid January. Maybe I should go climb Mt. Hood > away from the toxic mold. > > a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Hi a, PLEASE don't go up Mt Hood. I feel sad about what happened there this past week Where can I get a roster for the conference? I share your frustration. I have been on multiple antibiotics for the past 3 years. I am better. Not cured but better than from any other treatment including alternatives. The Dr. who treats me was asked to speak at a CFIDS presentation here in Sacramento a few weeks ago. When he was asked the focus of his treatment ( antibiotic therapy) he was told they didn't want anyone presenting on unproven therapies. I was so mad I didn't go to the presentation. Gail jeanneus wrote: > > Hi Gail, > If you look over the schedule there are sessions on viruses and cfs, > and there are some genetics and proteomics sessions. But at 4:00 pm > Sunday there is a Post Conference Workshop " Infections in CFS. " Even > this post session is dominated by antiviral or immunomodulatory > strategies. " Dr. Garth Nicolson is listed - he is the only one who > has focused on bacterial infections in cfs. I see no mention of Lyme > at all. Indeed, in 2004 the only reason Lyme and antibiotics were > mentioned is because I put pressure on to get Richie Shoemaker and > Dr. Trevor Marshall on the program. I think out of that the CDC > decided to address Lyme and talk about how it didn't exist in the > south. I believe they also mentioned that most cfs patients test > negative, not bothering to mention that most LYME patients test > negative as the tests are no good. > > It doesn't seem to matter how many of us patients over the years have > reported improvement on antibiotics or tested positive for various > bacteria, it is like we are ghosts standing in the room, never being > heard. > > I for one am tired of the whole thing. I can think of a lot nicer way > to spend a few days mid January. Maybe I should go climb Mt. Hood > away from the toxic mold. > > a Carnes > > > > > What do you mean a post conference presentation? > > Is it part of the conference. > > > > Interesting that the one thing many of us have in common, > infections, > > gets added as a tag on. > > Sheeesh. > > Gail > > > > pjeanneus wrote: > > > > > > Hi Jill, > > > I finally decided yesterday that I will not be going to the > > > conference. Yes, I agree some of the presenters look good, perhaps > > > better than past years. > > > > > > and I do have our pet theories, his being toxic mold and mine > > > being mycoplasma and borrelia COMBINED with toxic mold. > > > > > > I regret that the presentation of Lyme at the Madison, WI > conference > > > included a sarcastic, tongue in check, mimimalization of the > serious > > > issue of chronic borreliosis. Those of us with cfs and fms from > the > > > south were told that we couldn't have Lyme disease as the strain > of > > > borrelia in the south is a mild illness of three weeks' duration. > > > Never mind that I stood up to demonstrate that my entire family > has > > > Lyme, all from South Carolina ticks. But I digress. > > > > > > Unfortunately, I see on this year's schedule that infections in > cfs > > > is being saved for a post conference presentation. I guess this > means > > > folks who think their cfs is not caused by infection can catch an > > > early plane out and not have to be presented with any evidence > that > > > rattles their theoretical cages. Heaven forbit they should be > told to > > > try antibiotics. > > > > > > I don't even see the word " Lyme " on the agenda this year. I could > > > have missed it. But, if you take Rich V's approach and decide that > > > people like me - with classic CFS diagnoses even to tilt table > tests - > > > are no longer in the cfs category because we now have a diagnosis > > > that rules out cfs...I get so sick of writing this I can't even > waste > > > more time on it...then I guess they don't have to talk about > borrelia > > > at a cfs conference because no one there has borrelia. Right? Of > > > course, right. If we could just accurately test more attendees at > > > this conference there would probably be so few left to attend that > > > they would have to close the IACFS and go home. > > > > > > We have to talk and talk and talk, not about LABELS but about > CAUSES - > > > toxic mold, mycoplasmas, borrelia, babesia, roundworms, ehrlichia, > > > c. pneumoniae. We don't know what cfs is, let alone what to call > it, > > > until we get accurate tests and RUN THEM ON CFS PATIENTS. > > > > > > If you get a chance, please quote me at the conference. > > > > > > Your friend, > > > a Carnes > > > > > > > > > > > > > > > , > > > > > > > > I'm not interested in playing games with you or ruminating on > the > > > past or > > > > who said what or obsessing about what happened in Incline > Village. > > > The past > > > > is past. Continue your undying, never-ending allegiance to CFS > and > > > Incline > > > > Village if you want but I'm not interested. Inordinate amounts > of > > > time is > > > > wasted with these distractions and do not have the time nor > > > inclination to > > > > get dragged into these absurd debates - which you seem to thrive > > > on. What > > > > really matters is what is happening now. Some do want to move > > > forward. > > > > > > > > Jill > > > > > > > > ____________ ______ > > > > > > > > > > > > Re: IACFS conference > > > > Tue Dec 19, 2006 8:30 am (PST) > > > > Jill McLaughlin <jillmclaughlin@ > wrote: > > > > > I'm going to the conference and think it looks good. > > > > > > > > Then I will be expecting you to repeat to them the same things > you > > > > said to me. > > > > I can send them copies of your statements, if you wish. > > > > - > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Hi a, Sorry to hear this, but think it is one of the best all around. But I do see your points and agree in general. I wanted more specific on Lyme and autism and Amy Yasko. The Lyme session in Madison was very disappointing -- well, bad, and think it should be given more prominence. The infection aspect should not be dismissed just because it has not all crystalized, as from our practical standpoint it provides among the most beneficial treatment in general. There have been complaints that it is too heavily focused on pure academic research and not enough clinical focus even to attract clinicians to participate. Of course we need research and this is an excellent venue to put it all together and get all of the researchers to listen to each other. Simply put, the ramifications are patients' main concerns of being able to access decent treatment. Actually the labels are important and do play into this area as well. CFS is not one thing and uncontrolled patient heterogeneity has complicated all studies and interpretation of findings. CFS doesn't and hasn't worked no matter how much spin and hype goes into it. But I will pass it on or feel free to do so. There will also be advocacy sessions within the patient conference and will try to pass on or incorporate requests or comments for those unable to attend. But a quick update, the discounted room rate is no longer available, but Hotels.com. has a 25% discount for staying at least 4 nights. There are still some rooms left with Hotels.com last I heard. Their number is 800-246-8357. Jill ________________________ Re: IACFS conference Hi Jill, I finally decided yesterday that I will not be going to the conference. Yes, I agree some of the presenters look good, perhaps better than past years. and I do have our pet theories, his being toxic mold and mine being mycoplasma and borrelia COMBINED with toxic mold. I regret that the presentation of Lyme at the Madison, WI conference included a sarcastic, tongue in check, mimimalization of the serious issue of chronic borreliosis. Those of us with cfs and fms from the south were told that we couldn't have Lyme disease as the strain of borrelia in the south is a mild illness of three weeks' duration. Never mind that I stood up to demonstrate that my entire family has Lyme, all from South Carolina ticks. But I digress. Unfortunately, I see on this year's schedule that infections in cfs is being saved for a post conference presentation. I guess this means folks who think their cfs is not caused by infection can catch an early plane out and not have to be presented with any evidence that rattles their theoretical cages. Heaven forbit they should be told to try antibiotics. I don't even see the word " Lyme " on the agenda this year. I could have missed it. But, if you take Rich V's approach and decide that people like me - with classic CFS diagnoses even to tilt table tests - are no longer in the cfs category because we now have a diagnosis that rules out cfs...I get so sick of writing this I can't even waste more time on it...then I guess they don't have to talk about borrelia at a cfs conference because no one there has borrelia. Right? Of course, right. If we could just accurately test more attendees at this conference there would probably be so few left to attend that they would have to close the IACFS and go home. We have to talk and talk and talk, not about LABELS but about CAUSES - toxic mold, mycoplasmas, borrelia, babesia, roundworms, ehrlichia, c. pneumoniae. We don't know what cfs is, let alone what to call it, until we get accurate tests and RUN THEM ON CFS PATIENTS. If you get a chance, please quote me at the conference. Your friend, a Carnes > > > , > > I'm not interested in playing games with you or ruminating on the past or > who said what or obsessing about what happened in Incline Village. The past > is past. Continue your undying, never-ending allegiance to CFS and Incline > Village if you want but I'm not interested. Inordinate amounts of time is > wasted with these distractions and do not have the time nor inclination to > get dragged into these absurd debates - which you seem to thrive on. What > really matters is what is happening now. Some do want to move forward. > > Jill > > __________________ > > > Re: IACFS conference > Tue Dec 19, 2006 8:30 am (PST) > Jill McLaughlin <jillmclaughlin@> wrote: > > I'm going to the conference and think it looks good. > > Then I will be expecting you to repeat to them the same things you > said to me. > I can send them copies of your statements, if you wish. > - > Wed Dec 20, 2006 4:29 pm Show Message Option ------------------------------------------------------------------------ View SourceUse Fixed Width FontUnwrap Lines ------------------------------------------------------------------------ " pjeanneus " <pj7@...> pjeanneus Offline Send Email Invite to 360° Reply Forward Message #110320 of 110333 < Prev | Next > Expand Messages Author Sort by Date IACFS conference I'm going to the conference and think it looks good. I believe that Dr. Kerr is presenting and Dr. Chia, Dr. Carruthers from Canada, Dr. DeMerlier of course,... Jill McLaughlin jdmc128 Dec 18, 2006 11:11 pm Re: IACFS conference .... Then I will be expecting you to repeat to them the same things you said to me. I can send them copies of your statements, if you wish. -... erikmoldwarrior Dec 19, 2006 11:30 am Re: IACFS conference .... ***No CBT?...OK, , who did you " off " to make this happen? I know given your tenacity with mold avoidance applied to discarding the bodies that they... davidhall2020 Dec 19, 2006 12:25 pm Re: IACFS conference .... Everyone was " wavering " about whether the illness was real. People separated into groups of either blustering denial, or stark fear of us. And then Kaplan... erikmoldwarrior Dec 19, 2006 12:56 pm IACFS conference , I'm not interested in playing games with you or ruminating on the past or who said what or obsessing about what happened in Incline Village. The past is... Jill McLaughlin jdmc128 9:40 am Re: IACFS conference .... past or who said what or obsessing about what happened in Incline Village. The past is past. Continue your undying, never-ending allegiance to CFS and... erikmoldwarrior 2:25 pm Re: IACFS conference Hi Jill, I finally decided yesterday that I will not be going to the conference. Yes, I agree some of the presenters look good, perhaps better than past years.... pjeanneus 4:31 pm Re: IACFS conference Hi, a. Well, I'll certainly miss seeing you there and talking with you this time. I do want to make it clear that what you refer to as my approach below... rvankonynen 5:35 pm Re: IACFS conference .... a, It's funny, I suppose, but I don't think of mold as a theory. If you see an oven with the dial turned on, I guess you'd have a theory that it might... erikmoldwarrior 6:31 pm Re: IACFS conference , I used the word " theory " in the strong scientific sense of the word = as close to proven as you can get in science. a ... mine ... be ... that .... ... pjeanneus 9:36 pm Re: IACFS conference .... word = as close to proven as you can get in science. ... Ahh, thank you. Figured it might be so, but after so many years of hearing about " 's mold... erikmoldwarrior 10:03 pm Re: IACFS conference What do you mean a post conference presentation? Is it part of the conference. Interesting that the one thing many of us have in common, infections, gets added... Gail Ilse-Mayberry msmabrry 7:47 pm Re: IACFS conference Hi Gail, If you look over the schedule there are sessions on viruses and cfs, and there are some genetics and proteomics sessions. But at 4:00 pm Sunday there... pjeanneus 9:50 pm Re: IACFS conference a-I can't agree w/ your statement below any more strongly. After 20+ years of conferences, breakthroughs, etc. I have come to believe that the only way we... yakcamp22 10:35 pm < Prev Topic  | Next Topic > Message # Go Search: Search Advanced Start Topic ! SPONSOR RESULTS Natural Solutions for Chronic Fatigue - Effective ways to restore adrenal gland functions, regain energy, and improve your vitality with naturopathic medicine at Restore Balance Natural Health Center, Lynnwood, WA. restorebalance.com Chronic Fatigue Syndrome - Acetyl-l-carnitine, alpha lipoic acid and CoQ10 all in one capsule. 90 caps $41.60 for energy and longevity. www.biosynergy.com The CFIDS Association - Working to end chronic fatigue syndrome (CFS or CFIDS) and bring hope and help to those who suffer from it through our efforts in CFS awareness, education, public policy and research. www.cfids.org ------------------------------------------------------------------------ Copyright © 2006 All rights reserved. Privacy Policy - Copyright/IP Policy - Terms of Service - Guidelines - Help  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Mike, I wonder if there is a biotech company who might want to work on better diagnostic tests for intracellular bacteria? I think IgeneX is privately owned but they might be a good place to start. a C. > > a-I can't agree w/ your statement below any more strongly. After > 20+ years of conferences, breakthroughs, etc. I have come to believe > that the only way we are going to make any progress toward a treatment > is to fund researchers on our own-I mean us patients. The CDC is still > doing prevalence studies and there are various studies going on that > only address one or two symptoms, like the Epotein study. These > studies are better than nothing, but I think the real breakthrough will > come from a researcher who is able to patent a treatment-i.e., someone > who is willing to devote the time and money necessary w/ the hope of > 'striking it rich' via their patent. I am all for this way of finding > a treatment, that is the way things work in the U.S. and I would be > willing to pay whatever it takes to get back to at least 80-90%. > > Mike C > > > In , " pjeanneus " <pj7@> wrote: > > I for one am tired of the whole thing. I can think of a lot nicer way > > to spend a few days mid January. Maybe I should go climb Mt. Hood > > away from the toxic mold. > > > > a Carnes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 " pjeanneus " wrote: > We have to talk and talk and talk, not about LABELS but about CAUSES - toxic mold, mycoplasmas, borrelia, babesia, roundworms, ehrlichia, c. pneumoniae. We don't know what cfs is, let alone what to call it, until we get accurate tests and RUN THEM ON CFS PATIENTS. > a Carnes Well put! Although Dr Shoemaker is not a speaker, I believe his poster presentation will be difficult to ignore. His concepts " fit the facts " . He does recognize the importance of these infectious co-factors. He's getting results with his therapy. He shaped his concepts in accordance with the original CFS cohort and performed specific testing which substantiates the concept of biotoxin mediation in " CFS " as originally defined, so it is " that type " of CFS which Dr Shoemaker is addressing. As Dr Bell and Dr Komaroff so eloquently stated in their reasons why they can continue to work under the term CFS, the label isn't important, and almost anything could serve perfectly well when people are willing to define precisely what that label represents - as Dr Klimas does. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Right. What I was attempting to write was that initially patients or CFS organizations fund a reseacher, then some company buys the patent that the research has produced with the hopes of striking it rich. I think the NCF has been trying, but if you read a's latest message, it is easy to see that nobody can even determine if CFS is bacterial or viral or something else. If I were a corporation, I wouldn't spend a large amount of money purchasing the rights to any research that has been done so far. I guess we just have to keep trying and eventually we will 'kiss the frog that turns into the Prince'. Mike C > > I for one am tired of the whole thing. I can think of a lot nicer way > > to spend a few days mid January. Maybe I should go climb Mt. Hood > > away from the toxic mold. > > > > a Carnes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Hi Mike, I know this is my pet hunch because everyone in my family turns out has borrelia. My cfs was a classic case, yet it turned out to be Lyme. I've mentioned a cfs doctor here before who found that 95% of his cfs patients were, in reality, Lyme cases. So what I would like to see is a massive study testing cfs patients for a few pathogens. Trouble is, no one can agree on valid tests. This would mean that some would turn up false negative. If the standard western blots at LabCorp and Quest were used for borrelia there were be massive numbers of false negatives, and the whole thing would look like a joke. If IgeneX were used the government would say their test was no good. I've done a fair amount of stock market research, but I can't figure out who stands to make money on this one when you can't get the government behind it. a C. > > Right. What I was attempting to write was that initially patients or > CFS organizations fund a reseacher, then some company buys > the patent that the research has produced with the hopes of striking > it rich. I think the NCF has been trying, but if you read a's > latest message, it is easy to see that nobody can even determine if > CFS is bacterial or viral or something else. If I were a corporation, > I wouldn't spend a large amount of money purchasing the rights to > any research that has been done so far. I guess we just have to > keep trying and eventually we will 'kiss the frog that turns into > the Prince'. > > Mike C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Or not. It was around '81 that my illness got so bad that my life really fell apart. I revived after that to be able to work part time for a few years, but it has been downhill all the way ever since. It has been many, many years since I have earned a paycheck. I am 68 now. I am not as acutely ill as I once was, but I am way more disabled. My salvation has been to accept that something really awful has happened to my life-and to make the best of it. There is no way for any one of us to rank or rate just how sick we are or have been in comparison to others-but I don't know how I survived the worst of it. I mean, it was pretty bad. I have had more than my share of wishing I was dead- and even a plan how to end it all if it got too bad. I would characterize it as a kind of violence, what the illness did to me. And I just think I avoided at least some of the pitfalls, because I wasn't thrashing about too much, trying too hard to get well, feeling like I HAD to get well. True, they keep chipping away at it, but we still have cancer with us- and that with tons of money spent, and none of the sociopolitical messes we get. Some aspects of life are just a bitch! Adrienne Re: IACFS conference Right. What I was attempting to write was that initially patients or CFS organizations fund a reseacher, then some company buys the patent that the research has produced with the hopes of striking it rich. I think the NCF has been trying, but if you read a's latest message, it is easy to see that nobody can even determine if CFS is bacterial or viral or something else. If I were a corporation, I wouldn't spend a large amount of money purchasing the rights to any research that has been done so far. I guess we just have to keep trying and eventually we will 'kiss the frog that turns into the Prince'. Mike C > > I for one am tired of the whole thing. I can think of a lot nicer way > > to spend a few days mid January. Maybe I should go climb Mt. Hood > > away from the toxic mold. > > > > a Carnes > 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 December 22, 2006 Report Share Posted December 22, 2006 I couldn't agree with you more. I could have written this post and then some. " Adrienne G. " <duckblossm@...> wrote: Or not. It was around '81 that my illness got so bad that my life really fell apart. I revived after that to be able to work part time for a few years, but it has been downhill all the way ever since. It has been many, many years since I have earned a paycheck. I am 68 now. I am not as acutely ill as I once was, but I am way more disabled. My salvation has been to accept that something really awful has happened to my life-and to make the best of it. There is no way for any one of us to rank or rate just how sick we are or have been in comparison to others-but I don't know how I survived the worst of it. I mean, it was pretty bad. I have had more than my share of wishing I was dead- and even a plan how to end it all if it got too bad. I would characterize it as a kind of violence, what the illness did to me. And I just think I avoided at least some of the pitfalls, because I wasn't thrashing about too much, trying too hard to get well, feeling like I HAD to get well. True, they keep chipping away at it, but we still have cancer with us- and that with tons of money spent, and none of the sociopolitical messes we get. Some aspects of life are just a bitch! Adrienne Re: IACFS conference Right. What I was attempting to write was that initially patients or CFS organizations fund a reseacher, then some company buys the patent that the research has produced with the hopes of striking it rich. I think the NCF has been trying, but if you read a's latest message, it is easy to see that nobody can even determine if CFS is bacterial or viral or something else. If I were a corporation, I wouldn't spend a large amount of money purchasing the rights to any research that has been done so far. I guess we just have to keep trying and eventually we will 'kiss the frog that turns into the Prince'. Mike C > > I for one am tired of the whole thing. I can think of a lot nicer way > > to spend a few days mid January. Maybe I should go climb Mt. Hood > > away from the toxic mold. > > > > a Carnes > 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 December 22, 2006 Report Share Posted December 22, 2006 But the current cohort of CFS patients is no longer the same as the Incline Village cohort, regardless what happened back then. Continuing to ignore this issue is the crux of the problem and is exactly what the psychiatrists and CDC does. Dr. Bell and Komaroff both recognize the problems with CFS even though we all are stuck with using it to some degree. Dr. Bell has spoken on this and has written about it in his newsletter so he is no fan of CFS and Komaroff has admitted that it was a mistake. Jill ___________________ Reply | Forward Message #110358 of 110359 < Prev | Next > Re: IACFS conference " pjeanneus " wrote: > We have to talk and talk and talk, not about LABELS but about CAUSES - toxic mold, mycoplasmas, borrelia, babesia, roundworms, ehrlichia, c. pneumoniae. We don't know what cfs is, let alone what to call it, until we get accurate tests and RUN THEM ON CFS PATIENTS. > a Carnes Well put! Although Dr Shoemaker is not a speaker, I believe his poster presentation will be difficult to ignore. His concepts " fit the facts " . He does recognize the importance of these infectious co-factors. He's getting results with his therapy. He shaped his concepts in accordance with the original CFS cohort and performed specific testing which substantiates the concept of biotoxin mediation in " CFS " as originally defined, so it is " that type " of CFS which Dr Shoemaker is addressing. As Dr Bell and Dr Komaroff so eloquently stated in their reasons why they can continue to work under the term CFS, the label isn't important, and almost anything could serve perfectly well when people are willing to define precisely what that label represents - as Dr Klimas does. - Thu Dec 21, 2006 10:32 pm Show Message Option ------------------------------------------------------------------------ View SourceUse Fixed Width FontUnwrap Lines ------------------------------------------------------------------------ " erikmoldwarrior " <erikmoldwarrior@...> erikmoldwarrior Offline Send Email Invite to 360° Reply Forward Message #110358 of 110359 < Prev | Next > Expand Messages Author Sort by Date IACFS conference I'm going to the conference and think it looks good. I believe that Dr. Kerr is presenting and Dr. Chia, Dr. Carruthers from Canada, Dr. DeMerlier of course,... Jill McLaughlin jdmc128 Dec 18, 2006 11:11 pm Re: IACFS conference .... Then I will be expecting you to repeat to them the same things you said to me. I can send them copies of your statements, if you wish. -... erikmoldwarrior Dec 19, 2006 11:30 am Re: IACFS conference .... ***No CBT?...OK, , who did you " off " to make this happen? I know given your tenacity with mold avoidance applied to discarding the bodies that they... davidhall2020 Dec 19, 2006 12:25 pm Re: IACFS conference .... Everyone was " wavering " about whether the illness was real. People separated into groups of either blustering denial, or stark fear of us. And then Kaplan... erikmoldwarrior Dec 19, 2006 12:56 pm IACFS conference , I'm not interested in playing games with you or ruminating on the past or who said what or obsessing about what happened in Incline Village. The past is... Jill McLaughlin jdmc128 Dec 20, 2006 9:40 am Re: IACFS conference .... past or who said what or obsessing about what happened in Incline Village. The past is past. Continue your undying, never-ending allegiance to CFS and... erikmoldwarrior Dec 20, 2006 2:25 pm Re: IACFS conference Hi Jill, I finally decided yesterday that I will not be going to the conference. Yes, I agree some of the presenters look good, perhaps better than past years.... pjeanneus Dec 20, 2006 4:31 pm Re: IACFS conference Hi, a. Well, I'll certainly miss seeing you there and talking with you this time. I do want to make it clear that what you refer to as my approach below... rvankonynen Dec 20, 2006 5:35 pm Re: IACFS conference .... a, It's funny, I suppose, but I don't think of mold as a theory. If you see an oven with the dial turned on, I guess you'd have a theory that it might... erikmoldwarrior Dec 20, 2006 6:31 pm Re: IACFS conference , I used the word " theory " in the strong scientific sense of the word = as close to proven as you can get in science. a ... mine ... be ... that .... ... pjeanneus Dec 20, 2006 9:36 pm Re: IACFS conference .... word = as close to proven as you can get in science. ... Ahh, thank you. Figured it might be so, but after so many years of hearing about " 's mold... erikmoldwarrior Dec 20, 2006 10:03 pm Re: IACFS conference What do you mean a post conference presentation? Is it part of the conference. Interesting that the one thing many of us have in common, infections, gets added... Gail Ilse-Mayberry msmabrry Dec 20, 2006 7:47 pm Re: IACFS conference Hi Gail, If you look over the schedule there are sessions on viruses and cfs, and there are some genetics and proteomics sessions. But at 4:00 pm Sunday there... pjeanneus Dec 20, 2006 9:50 pm Re: IACFS conference a-I can't agree w/ your statement below any more strongly. After 20+ years of conferences, breakthroughs, etc. I have come to believe that the only way we... yakcamp22 Dec 20, 2006 10:35 pm Re: IACFS conference Mike, I wonder if there is a biotech company who might want to work on better diagnostic tests for intracellular bacteria? I think IgeneX is privately owned... pjeanneus 8:59 pm Re: IACFS conference Hi a, PLEASE don't go up Mt Hood. I feel sad about what happened there this past week Where can I get a roster for the conference? I share your... Gail Ilse-Mayberry msmabrry 3:16 am Re: IACFS conference .... CAUSES - toxic mold, mycoplasmas, borrelia, babesia, roundworms, ehrlichia, c. pneumoniae. We don't know what cfs is, let alone what to call it, until... erikmoldwarrior 10:33 pm Re: IACFS conference Hi a, Sorry to hear this, but think it is one of the best all around. But I do see your points and agree in general. I wanted more specific on Lyme and... Jill McLaughlin jdmc128 9:18 pm IACFS conference Hi Mike, Patient funding is crucial to most illnesses, but practically cannot provide nearly enough. What CFS groups provide is extremely small and many... Jill McLaughlin jdmc128 9:48 pm Re: IACFS conference Right. What I was attempting to write was that initially patients or CFS organizations fund a reseacher, then some company buys the patent that the research... yakcamp22 10:48 pm < Prev Topic  | Next Topic > Message # Go Search: Search Advanced Start Topic ! SPONSOR RESULTS Chronic Fatigue Syndrome - Acetyl-l-carnitine, alpha lipoic acid and CoQ10 all in one capsule. 90 caps $41.60 for energy and longevity. www.biosynergy.com Bullet Speed Energy - Eliminate Fatigue - Stop Fatigue before it starts with Bullet Speed energy pills. Buy 2 Get 1 Free. www.redbulletspeed.com Get Freedom From Chronic Fatigue - Get real, lasting energy fast. Activive is an advanced combination of essential " super sugars " guaranteed to relieve your chronic fatigue and restore energy safely with no side-effects. www.micronutra.com ------------------------------------------------------------------------ Copyright © 2006 All rights reserved. Privacy Policy - Copyright/IP Policy - Terms of Service - Guidelines - Help  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 " Adrienne G. " wrote: It was around '81 that my illness got so bad that my life really fell apart. > First person I saw who described this illness to me PERFECTLY was in '80 down in the South Bay Area, not too far from Silicon Valley. Five years before I saw it sweep through Incline. It wasn't the illness that was unbelievable, it was the response of people around her. I saw people " choose " what to believe and completely ignore her physical appearance and everything she said. She obviously had no name for this, but different people could look at her and the reaction ranged from " Obviously ill " to " Can't prove it " . But I was there the day she hopefully went to a doctor who had seemed sympathetic, and returned home in tears, totally devastated. She told us that the doctor had diagnosed her with " Doctor Seeking Behavior " , a mental illness in which people wander endlessly from doctor to doctor, trying to obtain validation for their imaginary complaints. The doctor said that " She believes her illness is real, and the worst thing you can do is feed into it by validating her " . And then a peculiar thing happened. Those who had been " believers " and said the illness was " Obvious " showed no backbone to their beliefs and went mentally limp, while those who tended to the " Can't prove it " went WILD in their righteous condemnation and denial - totally confirmed by the GODHOOD of Doctordom. I just about lost it, and yelled " LOOK AT HER. LOOK AT HER " . Here's where it got interesting, for the few who had initially supported her stood silent, while the " denialists " showed the greater fortitude and focused all their " If the doctor says.. " BS on me. Nothing less than a baseball bat was going to alter their opinions, and since I didn't want to go to jail, there was nothing much I could do. But a silent rage built up in me, and I said to myself " If such a thing should ever happen to me, they wouldn't do that to me. I wouldn't let them! For there must be a lower threshold to stupidity that even these people cannot descend below. It would be impossible to watch an athlete be overcome in such a way and reach that ridiculous conclusion. To apply something like that to someone like myself would be too far beyond the pale, even for idiots like these " . And then it happened to me! Haven't got out the bat yet, but there have been times... - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 , Your account of this woman touched me. I have been doing fairly well for several years now, but seven months ago I developed a strange headache and vertigo. I did get a diagnosis of vestibular nerve damage, but no cause. So I went to a neurologist. He refused to give me diflucan even though I had developed thrusht at the same time as the vertigo - never had thrush before in my entire life. I went to the emergency room one night the headache was so bad. Then the neurologist did a lumbar puncture - nothing turned up, same for MRI and CT scan. So when I saw him again he couldn't do anything for me. I am sitting there so spaced out with this headache of seven months I couldn't even think of the word " hypocondriac " to tell him I wasn't one. I felt so helpless. My GP gave me diflucan. It isn't helping one bit. So I am on my own. Aren't we all? I'm going to try capsaicin nasal spray next. Never thought I would be treating myself with pepper spray! Isn't that nuts? a C. > > " Adrienne G. " wrote: > It was around '81 that my illness got so bad that my life really > fell apart. > > > > > First person I saw who described this illness to me PERFECTLY was > in '80 down in the South Bay Area, not too far from Silicon Valley. > Five years before I saw it sweep through Incline. > > It wasn't the illness that was unbelievable, it was the response of > people around her. I saw people " choose " what to believe and > completely ignore her physical appearance and everything she said. > > She obviously had no name for this, but different people could look > at her and the reaction ranged from " Obviously ill " to " Can't prove > it " . > > But I was there the day she hopefully went to a doctor who had > seemed sympathetic, and returned home in tears, totally devastated. > She told us that the doctor had diagnosed her with " Doctor Seeking > Behavior " , a mental illness in which people wander endlessly from > doctor to doctor, trying to obtain validation for their imaginary > complaints. > The doctor said that " She believes her illness is real, and the > worst thing you can do is feed into it by validating her " . > > And then a peculiar thing happened. Those who had been " believers " > and said the illness was " Obvious " showed no backbone to their > beliefs and went mentally limp, while those who tended to the " Can't > prove it " went WILD in their righteous condemnation and denial - > totally confirmed by the GODHOOD of Doctordom. > > I just about lost it, and yelled " LOOK AT HER. LOOK AT HER " . > Here's where it got interesting, for the few who had initially > supported her stood silent, while the " denialists " showed the greater > fortitude and focused all their " If the doctor says.. " BS on me. > > Nothing less than a baseball bat was going to alter their opinions, > and since I didn't want to go to jail, there was nothing much I could > do. > But a silent rage built up in me, and I said to myself " If such a > thing should ever happen to me, they wouldn't do that to me. I > wouldn't let them! For there must be a lower threshold to stupidity > that even these people cannot descend below. It would be impossible > to watch an athlete be overcome in such a way and reach that > ridiculous conclusion. To apply something like that to someone like > myself would be too far beyond the pale, even for idiots like these " . > > And then it happened to me! > Haven't got out the bat yet, but there have been times... > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Jill, How are they different? Thanks, a Carnes > > > But the current cohort of CFS patients is no longer the same as the Incline > Village cohort, regardless what happened back then. Continuing to ignore > this issue is the crux of the problem and is exactly what the psychiatrists > and CDC does. > > Dr. Bell and Komaroff both recognize the problems with CFS even though we > all are stuck with using it to some degree. Dr. Bell has spoken on this and > has written about it in his newsletter so he is no fan of CFS and Komaroff > has admitted that it was a mistake. > > Jill > > ___________________ > > > > Reply | Forward Message #110358 of 110359 < Prev | Next > > Re: IACFS conference > > " pjeanneus " wrote: > > > We have to talk and talk and talk, not about LABELS but about > CAUSES - toxic mold, mycoplasmas, borrelia, babesia, roundworms, > ehrlichia, c. pneumoniae. We don't know what cfs is, let alone what > to call it, until we get accurate tests and RUN THEM ON CFS > PATIENTS. > > a Carnes > > > Well put! > Although Dr Shoemaker is not a speaker, I believe his poster > presentation will be difficult to ignore. > His concepts " fit the facts " . > He does recognize the importance of these infectious co-factors. > He's getting results with his therapy. > He shaped his concepts in accordance with the original CFS cohort > and performed specific testing which substantiates the concept of > biotoxin mediation in " CFS " as originally defined, so it is " that > type " of CFS which Dr Shoemaker is addressing. > > As Dr Bell and Dr Komaroff so eloquently stated in their reasons why > they can continue to work under the term CFS, the label isn't > important, and almost anything could serve perfectly well when people > are willing to define precisely what that label represents - as Dr > Klimas does. > - > > > > > > > Thu Dec 21, 2006 10:32 pm > Show Message Option > > -------------------------------------------------------------------- ---- > > View SourceUse Fixed Width FontUnwrap Lines > > -------------------------------------------------------------------- ---- > " erikmoldwarrior " <erikmoldwarrior@> > erikmoldwarrior > Offline > Send Email > Invite to 360° > > > > Reply Forward Message #110358 of 110359 < Prev | Next > > > > > > > > Expand Messages Author Sort by Date > IACFS conference > I'm going to the conference and think it looks good. I believe that Dr. Kerr > is presenting and Dr. Chia, Dr. Carruthers from Canada, Dr. DeMerlier of > course,... Jill McLaughlin > jdmc128 > Dec 18, 2006 > 11:11 pm > Re: IACFS conference > ... Then I will be expecting you to repeat to them the same things you said > to me. I can send them copies of your statements, if you wish. - ... > erikmoldwarrior > Dec 19, 2006 > 11:30 am > Re: IACFS conference > ... ***No CBT?...OK, , who did you " off " to make this happen? I know > given your tenacity with mold avoidance applied to discarding the bodies > that they... davidhall2020 > Dec 19, 2006 > 12:25 pm > Re: IACFS conference > ... Everyone was " wavering " about whether the illness was real. People > separated into groups of either blustering denial, or stark fear of us. And > then Kaplan... erikmoldwarrior > Dec 19, 2006 > 12:56 pm > IACFS conference > , I'm not interested in playing games with you or ruminating on the past > or who said what or obsessing about what happened in Incline Village. The > past is... Jill McLaughlin > jdmc128 > Dec 20, 2006 > 9:40 am > Re: IACFS conference > ... past or who said what or obsessing about what happened in Incline > Village. The past is past. Continue your undying, never-ending allegiance to > CFS and... erikmoldwarrior > Dec 20, 2006 > 2:25 pm > Re: IACFS conference > Hi Jill, I finally decided yesterday that I will not be going to the > conference. Yes, I agree some of the presenters look good, perhaps better > than past years.... pjeanneus > Dec 20, 2006 > 4:31 pm > Re: IACFS conference > Hi, a. Well, I'll certainly miss seeing you there and talking with you > this time. I do want to make it clear that what you refer to as my approach > below... rvankonynen > Dec 20, 2006 > 5:35 pm > Re: IACFS conference > ... a, It's funny, I suppose, but I don't think of mold as a theory. If > you see an oven with the dial turned on, I guess you'd have a theory that it > might... erikmoldwarrior > Dec 20, 2006 > 6:31 pm > Re: IACFS conference > , I used the word " theory " in the strong scientific sense of the word = > as close to proven as you can get in science. a ... mine ... be ... that > ... ... pjeanneus > Dec 20, 2006 > 9:36 pm > Re: IACFS conference > ... word = as close to proven as you can get in science. ... Ahh, thank you. > Figured it might be so, but after so many years of hearing about " 's > mold... erikmoldwarrior > Dec 20, 2006 > 10:03 pm > Re: IACFS conference > What do you mean a post conference presentation? Is it part of the > conference. Interesting that the one thing many of us have in common, > infections, gets added... Gail Ilse-Mayberry > msmabrry > Dec 20, 2006 > 7:47 pm > Re: IACFS conference > Hi Gail, If you look over the schedule there are sessions on viruses and > cfs, and there are some genetics and proteomics sessions. But at 4:00 pm > Sunday there... pjeanneus > Dec 20, 2006 > 9:50 pm > Re: IACFS conference > a-I can't agree w/ your statement below any more strongly. After 20+ > years of conferences, breakthroughs, etc. I have come to believe that the > only way we... yakcamp22 > Dec 20, 2006 > 10:35 pm > Re: IACFS conference > Mike, I wonder if there is a biotech company who might want to work on > better diagnostic tests for intracellular bacteria? I think IgeneX is > privately owned... pjeanneus > 8:59 pm > Re: IACFS conference > Hi a, PLEASE don't go up Mt Hood. I feel sad about what happened there > this past week Where can I get a roster for the conference? I share your... > Gail Ilse-Mayberry > msmabrry > 3:16 am > Re: IACFS conference > ... CAUSES - toxic mold, mycoplasmas, borrelia, babesia, roundworms, > ehrlichia, c. pneumoniae. We don't know what cfs is, let alone what to call > it, until... erikmoldwarrior > 10:33 pm > Re: IACFS conference > Hi a, Sorry to hear this, but think it is one of the best all around. > But I do see your points and agree in general. I wanted more specific on > Lyme and... Jill McLaughlin > jdmc128 > 9:18 pm > IACFS conference > Hi Mike, Patient funding is crucial to most illnesses, but practically > cannot provide nearly enough. What CFS groups provide is extremely small and > many... Jill McLaughlin > jdmc128 > 9:48 pm > Re: IACFS conference > Right. What I was attempting to write was that initially patients or CFS > organizations fund a reseacher, then some company buys the patent that the > research... yakcamp22 > 10:48 pm > > > > < Prev Topic  | Next Topic > > > > > > Message # Go Search: Search Advanced > > Start Topic > > ! SPONSOR RESULTS > Chronic Fatigue Syndrome - Acetyl-l-carnitine, alpha lipoic acid and CoQ10 > all in one capsule. 90 caps $41.60 for energy and longevity. > www.biosynergy.com > Bullet Speed Energy - Eliminate Fatigue - Stop Fatigue before it starts with > Bullet Speed energy pills. Buy 2 Get 1 Free. > www.redbulletspeed.com > Get Freedom From Chronic Fatigue - Get real, lasting energy fast. Activive > is an advanced combination of essential " super sugars " guaranteed to relieve > your chronic fatigue and restore energy safely with no side-effects. > www.micronutra.com > > > > -------------------------------------------------------------------- ---- > Copyright © 2006 All rights reserved. > Privacy Policy - Copyright/IP Policy - Terms of Service - Guidelines - Help >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 So do you still have CFS? Thanks > > Hi Mike, > I know this is my pet hunch because everyone in my family turns out > has borrelia. My cfs was a classic case, yet it turned out to be Lyme. > I've mentioned a cfs doctor here before who found that 95% of his cfs > patients were, in reality, Lyme cases. > > So what I would like to see is a massive study testing cfs patients > for a few pathogens. Trouble is, no one can agree on valid tests. This > would mean that some would turn up false negative. If the standard > western blots at LabCorp and Quest were used for borrelia there were > be massive numbers of false negatives, and the whole thing would look > like a joke. If IgeneX were used the government would say their test > was no good. > > I've done a fair amount of stock market research, but I can't figure > out who stands to make money on this one when you can't get the > government behind it. > > a C. > > > > > Right. What I was attempting to write was that initially patients or > > CFS organizations fund a reseacher, then some company buys > > the patent that the research has produced with the hopes of striking > > it rich. I think the NCF has been trying, but if you read a's > > latest message, it is easy to see that nobody can even determine if > > CFS is bacterial or viral or something else. If I were a > corporation, > > I wouldn't spend a large amount of money purchasing the rights to > > any research that has been done so far. I guess we just have to > > keep trying and eventually we will 'kiss the frog that turns into > > the Prince'. > > > > Mike C > Quote Link to comment Share on other sites More sharing options...
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