Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 Gail, Very interesting. I wonder if the new antiviral medication that is coming out by the end of '00 is going to be effective against HHV6. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 Barb, it actually will take a lot less than an antiviral. We've found they only have to attack the lipid envelope. We're hoping the AIDS world realizes this and helps to fight the battle!!! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 Jerry, HHV-6A has a lipid envelope. So does HIV. With both, attacking the virus is unnessary. One the evelope has to be attacked. The CDC published on this in a small magazine years ago but it's never been on Medfile or any of the others. We got a copy from a researcher who had saved it in his files. Attacking the lipid envelope is a lot easier to do and so much less toxic. I don't think that's in the newsletter....there was just too much to try and get in! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 Gail, Are we talking about the evelope of HHV6A, JHK or something else? I imagine this will be in the next Forum? Jerry ----- Original Message ----- From: <GAILRONDA@...> > Barb, it actually will take a lot less than an antiviral. We've found they > only have to attack the lipid envelope. We're hoping the AIDS world realizes > this and helps to fight the battle!!! > Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2000 Report Share Posted February 2, 2000 Don't I know it, Gail. I'm glad there is once again a newsletter I can look forward to! There was a time when the Chronicle was something I could look forward to. Unfortunately it hasn't been that way for a long time and the Forum is now filling that void. Jerry ----- Original Message ----- From: <GAILRONDA@...> .....there was just too much to > try and get in! > Gail > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 In a message dated 2/3/00 11:09:44 AM Eastern Standard Time, leckie@... writes: << Are you familiar with with the fatty acid 'monolaurin'? It attacks the lipid coat of such viruses and is available over the counter from the Vitamin Shoppe. It is made by Cardiovascular Research. >> Yes. The CDC actually wrote an article on it years ago that they deep-sixed, but we got it from a researcher who had it in his files. It's even stronger when Acetyl-L Carinitine is also used. It seems, though, to merely " disturb " the envelope but not pierce it, which is better than nothing! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Gail, Are you familiar with with the fatty acid 'monolaurin'? It attacks the lipid coat of such viruses and is available over the counter from the Vitamin Shoppe. It is made by Cardiovascular Research. Regards, . Re: post mortem HHV6 > From: GAILRONDA@... > > Jerry, HHV-6A has a lipid envelope. So does HIV. With both, attacking the > virus is unnessary. One the evelope has to be attacked. The CDC published > on this in a small magazine years ago but it's never been on Medfile or any > of the others. We got a copy from a researcher who had saved it in his > files. Attacking the lipid envelope is a lot easier to do and so much less > toxic. I don't think that's in the newsletter....there was just too much to > try and get in! > Gail > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 In a message dated 2/3/00 5:40:18 PM Eastern Standard Time, sheri.clark@... writes: << Does the lipid coat need to be pierced or just smeared up? I've heard both ways now. >> To destroy HHV-6A, you need to pierce it, but disturbing it will inhibit replication for awhile. It has the uncanny ability to hide really well in the body so when you turn up negative, you usually aren't! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 In a message dated 2/3/00 5:50:38 PM Eastern Standard Time, moores@... writes: << Gail as long as we are bombarding you -- can any major acedemic hospital be trusted to do a HHV6 test of spinal fluid? >> I really don't trust any others right now. Most don't differentiate between A and B. I don't think there's even a spinal tap test available for us yet. Viral Pathogenics (http://www.hhv6.com) is working on an easier one, but I'm sure others are, too. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 In a message dated 2/3/00 8:27:00 PM Eastern Standard Time, moores@... writes: << * I thought ms drs were doing this sort of thing. So are you going to get on ganicloviar(sp). >> No, we're paying to have other things tested that will do more. I know of one patient, really acute, who used the ganciclovir for three weeks, but when she stopped, she plummeted....and you can't use it all the time. It's too toxic. Gail...waiting impatiently! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Gail, Jumping in here for question. Does the lipid coat need to be pierced or just smeared up? I've heard both ways now. Thank you, Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Gail as long as we are bombarding you -- can any major acedemic hospital be trusted to do a HHV6 test of spinal fluid? Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 * I thought ms drs were doing this sort of thing. So are you going to get on ganicloviar(sp). Steve GAILRONDA@... wrote: > From: GAILRONDA@... > > In a message dated 2/3/00 5:50:38 PM Eastern Standard Time, > moores@... writes: > > << Gail as long as we are bombarding you -- can any major acedemic hospital > be trusted to do a HHV6 test of spinal fluid? >> > I really don't trust any others right now. Most don't differentiate between > A and B. I don't think there's even a spinal tap test available for us yet. > Viral Pathogenics (http://www.hhv6.com) is working on an easier one, but I'm > sure others are, too. > Gail > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 Date: Wed, 2 Feb 2000 19:11:01 EST From: GAILRONDA@... Subject: Re: post mortem HHV6 << it actually will take a lot less than an antiviral. We've found they only have to attack the lipid envelope.>> I havent' seen this research yet... Who is the " we " you speak of trying to attack this lipid envelope ? Sounds promising! Best, Felscher __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 In a message dated 2/4/00 4:03:15 AM Eastern Standard Time, cindyfh@... writes: << I havent' seen this research yet... Who is the " we " you speak of trying to attack this lipid envelope ? Sounds promising! Best, Felscher >> Nobody has, it seems! The information was really " dug up " by a member of the board of The National CFIDS Foundation. The way to attack the virus was an article by the CDC that doesn't appear on Medline, etc. but we found one researcher who filed it. But, it appears that the government has known for many years how to attack AIDS to stop it in its tracks and has known for some time. We even spoke to a researcher who was on a SEC panel (the panel that advises whether to give a grant to a researcher through the NIH) for AIDS way back and she said only those working on the HIV link were granted. They knew then that it wasn't HIV that was the real culprit unless it was activated by another retrovirus. A lot of this is covered in our latest issue which has just begun to arrive (yesterday were the first reports). Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 In a message dated 2/4/00 2:33:43 PM Eastern Standard Time, moores@... writes: << Often the losers in a scientific debate make claims of suppression, and conspiracy. When if fact they have just lost in a competitive process. Of course they think the game was rigged -- they lost. But if the secret you speak of really existed how would it of evaded the scrutiny of so many investigative reporters. Having said that the meanness of academic debates -- the extent they ostracize those who are the losing side-- can look a little like suppression to the outside observes. Careers can be ruined, jobs maybe lost, and research go unfunded. It is a tough competitive process. But it is not a conspiracy. >> Steve, if we ever get a full congressional investigation, rather than the current GAO one that refuses to even look at our information, there are researchers willing to testify about CFS. While our material goes into this area, of course, it also goes into AIDS since we are talking about the exact same retrovirus and exact same strain. We have no less than 5 individual researchers willing to testify under oath that they have been threatened by Uncle Sam. Three have irrefutable proof of this. Another has the backing of an ex-government worker. None of them have worked together. When we recieved some of this information, we found it was hiding " in plain sight " but three days later, it was whisked out of the data base belonging to the government. We did not take any of this lightly, you can be sure, and sent several packets to researchers overseas. We've been in contact with quite a few and, for those who doubt what we've found, which we anticipated, we're arranging our own small trial with a researcher who will have no idea what he is testing for (the illness, that is). I've known bits and pieces of this for years but was shaken to my very core when I realized how high and how horrible this went. Even those in other countries have had ties to researchers in the US. A sixth one willing to testify is from Italy and a seventh one from Germany. We've tried hard not to believe this. I'm sure Regush did as well. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 Gail I was at the University of Michigan doing a social science post doc back in 1987 when this issue first came to light. I forget the names but one of the major AIDS researchers was a Michigan and she was interviewed about this issue in the University faculty paper. As I recall it was quite well known that a small group (it actually may have been one individual) did not buy into the HIV hypothesis. His (an I believe it was a he) views were well known but the were not accepted by the majority of the researchers in the US and France -- the two major research center. I am going by my memory here so I am not claiming to have my facts absolutely correct. Across all the sciences it is understood that there is not such thing as absolute objectivity. Indeed science is moves forward when a previously accepted belief is toppled and a new theory emerges. Science must therefore be based on intersubjective agreement (the agreement among the majority of scientist in an area -- just a little more sophisticated than the term the conventional wisdom). It seems that in the AIDS research community there was a high degree of intersubjective agreement that HIV is the most viable target in controlling AIDS. Naturally there were some who did not share in this agreement and the ideas of the dissenters were not supported (monetarily or otherwise). This does not constitute a conspiracy, it constitutes an academic disagreement. The government does at times keep secrets. I just read Moynihan book called " Secrecy " which is a history of how government has kept certain issues secret in the cold war years. However when we think of the NIH and the CDC there is no classification system which would allow for the hiding of information. (Remember it is the CDC which did the Wichita study that reveal the scope of the CFS problem) There is however intersubjective agreement on HIV and the tendency to discount other theories. This is not a conspiracy -- it is the normal process of competitive science. I do not know how much truth there is in the alternative AIDS hypothesis. However given the fact that it is well known (I thought everyone knew about the alternative hypotheses it has been around for over 12 years) another research institution, perhaps in another country, would have picked up on this hypothesis if any critical mass agreed with this theory. In an open country with competitive science there are no real conspiracies rather their are winning and loser (and yes I am aware that a few exceptions to this such as the experiment with syphilis in the South). So far the alternative AIDS theory has lost. It is also true that mainstream science has made reasonable (if not exceptional) in that scientific battle against AIDS. As far as the economic and political battle against AIDS is concern that is another matter. In the US not so bad but in Africa it has been a disaster. Often the losers in a scientific debate make claims of suppression, and conspiracy. When if fact they have just lost in a competitive process. Of course they think the game was rigged -- they lost. But if the secret you speak of really existed how would it of evaded the scrutiny of so many investigative reporters. Having said that the meanness of academic debates -- the extent they ostracize those who are the losing side-- can look a little like suppression to the outside observes. Careers can be ruined, jobs maybe lost, and research go unfunded. It is a tough competitive process. But it is not a conspiracy. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 In a message dated 2/4/00 5:58:45 PM Eastern Standard Time, KenL@... writes: << But it is not a conspiracy. >> Steve, the only advancement made by the NIH that is known publicy besides CBT is the HTP axix. Demitrack discovered that trying to prove it was all in the head. When the opposite was found, they refused to publish. Demitrack left. He spent two years redoing his work at a university. When he submitted for publication, Straus blocked him, took the old study out, dusted it off, and published. They gotten smarter since then. But it is not a conspiracy. Gold's study is listed under CFS funding but the title was secretly changed to eliminate CFS and it was all on mental illness. No CFS patient was used. But Grossberg has been funded and his funding refunded, yet his retroviral studies have not been published since the early 90's. And, although he works on the retrovirus found in CFS, his work is not mentioned under CFS funding. But it is not a conspriacy. Perhaps you have another name for the unending bias at the NIH. Perhaps you know who the " patient advocates " were who helped to plan the upcoming " state of the science " meeting at the NIH featuring Straus, Wesseley. and Sharpe. Perhaps it is a mistake that they funded an immunologist with money to do CBT work. Perhaps it was a mistake that they funded Barsky and partner for the ls of Medicine article that called this a " functional somatomization " and then edited the letters to the editor that will come out on the 15th of this month so much that the authors want to disown them. But it is not a conspiracy. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 Being a Ph.D. candidate before I smartened up and realized that I was not a " political " , I must completely agree with Steve here. CFIDS is a loosing cause for NIH and CDC... for example, if long term antibiotics are recognized as being the correct treatment for 70% of CFIDS patients, antibiotics that have been available for 40 years.... it is as embarrassing to the medical establishment as some fake " pre-humoid " fossil were, or suggesting that some dinosaurs had feathers.... On the otherhand, if it is cured with a new experimental anti-viral drug than their face is saved. I've seen this " face-saving-behaviour " when I designed applications for Main-Frame computers.... it is ugly... and mean. Ken ----- Original Message ----- From: Dr. Steve Having said that the meanness of academic debates -- the extent they ostracize those who are the losing side-- can look a little like suppression to the outside observes. Careers can be ruined, jobs maybe lost, and research go unfunded. It is a tough competitive process. But it is not a conspiracy. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2000 Report Share Posted February 5, 2000 When I spoke of advancements I was referring to AIDS not CFS. I completely agree that the advocates of CBT are desperately trying to get a hold on CFS. At best there method has helped some folk feel marginally better. psychologist routinely over estimate the benefits of CBT. The originally NIMH studies that compared CBT with imparimine(sp?) showed that the drug was significantly more effective than the placebo and the CBT was not. However due to the complex nature of the study it came out the CBT was not significantly better than the drug (when I say significant I mean statistical significant at the .05 level). So CBT was not better than nothing and drug were better than nothing but CBT was not found to be statistically different from drugs. It sound confusing doesn't it. However whenever one read the psychological literature when they quote the study they always indicate the CBT was found to be just as effective as drug (in away they are right) but they never say that CBT is just as effective as nothing. My concern is that CFS should not be coupled with the alternative theory of AIDS. The alliterative theory of AIDS may one day be proven right but I doubt it. An NO ONE knows for sure that CFS is caused by HHV6, you might believe it but you don't know it -- hell I will be the first one to try ProGan when it comes out but that is out of desperation not knowledge. The problem with CFS is that it has not yet been studied by the academic medical centers. This is a very different problem than the AIDS situation which has been studied in great detail and a strong majority opinion has been reached. The arrogance of the CBT crowd will crumble once CFS begins to be studied in academic settings. The Research of the New Jersey Institute that was funded by SS has already made an impact on social policy. This is not to discredit the work of the privateers, such as Cheney, Nicholson and the like. The academics may find their findings to be critical in an understanding of CFS. I think it a great mistake to couple advocatcy regarding CFS research with the alternative AIDS hypotheses. Research on HHV6 and CFS can be pursued without this coupling. The research that I have seen on CBT and CFS is weak and it will crumble on it's own as soon as more extensive biological research is pursued at academic medical centers. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2000 Report Share Posted February 5, 2000 In a message dated 2/5/00 1:19:10 PM Eastern Standard Time, onelist writes: << This is not to discredit the work of the privateers, such as Cheney, Nicholson and the like. The academics may find their findings to be critical in an understanding of CFS. >> Steve and all. It is darn near impossible to be a clinician and do research. Some- body has to see patients. The best that clinicians can do is try certain tests or therapies on a group of patients to determine it's effectiveness or degree of predictability. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 In a message dated 2/9/00 9:06:59 AM Eastern Standard Time, ccrane@... writes: << Gail, Does this kind of nonsense go on with other diseases? >> Not many of them, but it's more widespread than thought. A lot of people have told me how they envy the AIDS community being so strong and united. We had to contact various groups to give them some information and we found out how very splintered they were! But CFS has been especially bad in the " nonsense " department. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 Gail, Does this kind of nonsense go on with other diseases? in North Carolina > Re: Re: post mortem HHV6 > > > From: GAILRONDA@... > > In a message dated 2/4/00 5:58:45 PM Eastern Standard Time, > KenL@... > writes: > > << But > it is not a conspiracy. >> > Steve, the only advancement made by the NIH that is known publicy > besides CBT > is the HTP axix. Demitrack discovered that trying to prove it > was all in the > head. When the opposite was found, they refused to publish. > Demitrack left. > He spent two years redoing his work at a university. When he > submitted for > publication, Straus blocked him, took the old study out, dusted > it off, and > published. They gotten smarter since then. But it is not a conspiracy. > Gold's study is listed under CFS funding but the title was > secretly changed > to eliminate CFS and it was all on mental illness. No CFS > patient was used. > But Grossberg has been funded and his funding refunded, yet his > retroviral > studies have not been published since the early 90's. And, > although he works > on the retrovirus found in CFS, his work is not mentioned under > CFS funding. > But it is not a conspriacy. Perhaps you have another name for > the unending > bias at the NIH. Perhaps you know who the " patient advocates " were who > helped to plan the upcoming " state of the science " meeting at the NIH > featuring Straus, Wesseley. and Sharpe. Perhaps it is a mistake > that they > funded an immunologist with money to do CBT work. Perhaps it was > a mistake > that they funded Barsky and partner for the ls of Medicine > article that > called this a " functional somatomization " and then edited the > letters to the > editor that will come out on the 15th of this month so much that > the authors > want to disown them. But it is not a conspiracy. > Gail > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 It's also in coconuts. Phil Leckie wrote: > From: " Leckie " <leckie@...> > > Gail, > > Are you familiar with with the fatty acid 'monolaurin'? It attacks the lipid > coat of such viruses and is available over the counter from the Vitamin > Shoppe. It is made by Cardiovascular Research. > > Regards, . > > Re: post mortem HHV6 > > > From: GAILRONDA@... > > > > Jerry, HHV-6A has a lipid envelope. So does HIV. With both, attacking > the > > virus is unnessary. One the evelope has to be attacked. The CDC > published > > on this in a small magazine years ago but it's never been on Medfile or > any > > of the others. We got a copy from a researcher who had saved it in his > > files. Attacking the lipid envelope is a lot easier to do and so much > less > > toxic. I don't think that's in the newsletter....there was just too much > to > > try and get in! > > Gail > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 From: " Crane " <ccrane@...> Does this kind of nonsense go on with other diseases? [Patti:] MS, GWS, autism, ADD, and adverse vaccine reactions spring to mind. Quote Link to comment Share on other sites More sharing options...
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