Guest guest Posted November 5, 2009 Report Share Posted November 5, 2009 Fantastic, landmark stuff indeed, wonder what the results will show show for kids with Autism.... Thanks for posting Natasa > > > > http://vipdx.com/ > > Dr. Lombardi, the primary investigator and first author on a paper > that appeared in the 8 October 2009 issue of ³Science², is the Director of > Operations for the licensing and development of the XAND test assays used by > VIP Dx for the detection of XMRV. To read this landmark publication, > " Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients > with Chronic Fatigue Syndrome " , please go to (www.sciencemag.org). We are > pleased to announce that VIP Dx has licensed this technology allowing us to > offer the most accurate and sensitive testing available for XAND (XMRV > associated neuro-immune disease). > > TO ORDER XAND TEST KITS, CONTACT VIP Dx. <http://vipdx.com/contact_us/> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Hi, I live in Australia and at present WPI licensed lab VIP are not doing testing outside US/Canada they wrote and told me it was due to being inundated with requests, that they are running a 4 - 6 wk back order from patients on their list to receive kits and those patients come first. That the list is getting longer. So it is unlikely anyone outside US/Canada will be tested for who knows how long by VIP. But was told to check again in February to see if they can accommodate frozen samples at that time I was told for anyone reading this in Europe that RED Laboratories in Belgium is working on licensing the technology from Whittemore . That will take place within the next several months. They told me they have had patients from Australia visiting the USA and they will accept samples while they are in the USA . I didn't want to wait and just sit and do nothing until whenever those tests become available. So I did the test offered by ative Diagnostics - XMRV Real Time PCR - I think it determines whether the virus DNA is detected - not wether it is active/inactive. It may not be 100% but it gives me an indication. My result was negative. This result is a doubled edge sword. Great I don't have the virus but what is causing my CFS at least I can put my energy and focus on other areas and not just sit an wait to be tested/have my life in other peoples hands while red tape is being sorted for licensed testing I can use. As we know there is so much out of balance in the body with cfs - even if XMRV is the cause there is still going to be a lot of mopping up to do. Thanks crusaderD I'm sorry, it was meant within our limits of the USA and Canada . We are inundated with requests from the USA and Canada and are working diligently to honor those requests. " Time and temperature changes ARE the reason we have never accepted samples from overseas plus the issues with Customs. We are running 4 to 6 weeks back order from patients that are on our list to receive kits; we will honor our commitment to those patients first. The list is getting longer each day. We have had other patients from Australia who will be visiting the USA and we will accept their samples while they are here in the USA . You can check again in February to see if we can accommodate frozen samples at that time. You will be responsible for all shipping costs. We will not ship a kit to you but we will give you specimen requirements at that time if you are still interested. Sorry we cannot accommodate your request. Marguerite Ross, Director Marketing & Client Relations VIP Dx / RedLabs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Dear crusaderD, I would not take a " negative " result from Coperative Diagnostics as the final word. I am part of a " cohort " that was accepted as a study group by CD--moms with CFS and their children on the autism spectrum. When our results came back last week, *all* of the results were negative. We find this odd, as statistically, going by the WPI results, there should have been at least a few positives. There's been some discussion over on the XMRV-Autism group about whether or not the CD test is reliable; I think it still remains to be seen. The only test I would trust at this point would be the ones done (more than one type of test was used) for the people in the WPI study. Marcia on in Salem, Massachusetts On Dec 25, 2009, at 11:38 PM, crusaderD wrote: > Hi, > > I live in Australia and at present WPI licensed lab VIP are not > doing testing outside US/Canada they wrote and told me it was due to > being inundated with requests, that they are running a 4 - 6 wk back > order from patients on their list to receive kits and those patients > come first. That the list is getting longer. So it is unlikely > anyone outside US/Canada will be tested for who knows how long by > VIP. But was told to check again in February to see if they can > accommodate frozen samples at that time > > I was told for anyone reading this in Europe that RED Laboratories > in Belgium is working on licensing the technology from Whittemore > . That will take place within the next several months. > > They told me they have had patients from Australia visiting the USA > and they will accept samples while they are in the USA . > > I didn't want to wait and just sit and do nothing until whenever > those tests become available. So I did the test offered by > ative Diagnostics - XMRV Real Time PCR - I think it determines > whether the virus DNA is detected - not wether it is active/ > inactive. It may not be 100% but it gives me an indication. My > result was negative. > > This result is a doubled edge sword. Great I don't have the virus > but what is causing my CFS at least I can put my energy and focus on > other areas and not just sit an wait to be tested/have my life in > other peoples hands while red tape is being sorted for licensed > testing I can use. As we know there is so much out of balance in the > body with cfs - even if XMRV is the cause there is still going to be > a lot of mopping up to do. > > Thanks > crusaderD > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 from the message boards i read, no one has tested positive from ative Dx. i personally would not get tested there. i understand there is a 33% chance of a false negative even at WPI. ________________________________ From: Marcia on <mmorrison@...> Sent: Sat, December 26, 2009 2:33:11 PM Subject: Re: XMRV testing  Dear crusaderD, I would not take a " negative " result from Coperative Diagnostics as the final word. I am part of a " cohort " that was accepted as a study group by CD--moms with CFS and their children on the autism spectrum. When our results came back last week, *all* of the results were negative. We find this odd, as statistically, going by the WPI results, there should have been at least a few positives. There's been some discussion over on the XMRV-Autism group about whether or not the CD test is reliable; I think it still remains to be seen. The only test I would trust at this point would be the ones done (more than one type of test was used) for the people in the WPI study. Marcia on in Salem, Massachusetts On Dec 25, 2009, at 11:38 PM, crusaderD wrote: > Hi, > > I live in Australia and at present WPI licensed lab VIP are not > doing testing outside US/Canada they wrote and told me it was due to > being inundated with requests, that they are running a 4 - 6 wk back > order from patients on their list to receive kits and those patients > come first. That the list is getting longer. So it is unlikely > anyone outside US/Canada will be tested for who knows how long by > VIP. But was told to check again in February to see if they can > accommodate frozen samples at that time > > I was told for anyone reading this in Europe that RED Laboratories > in Belgium is working on licensing the technology from Whittemore > . That will take place within the next several months. > > They told me they have had patients from Australia visiting the USA > and they will accept samples while they are in the USA . > > I didn't want to wait and just sit and do nothing until whenever > those tests become available. So I did the test offered by > ative Diagnostics - XMRV Real Time PCR - I think it determines > whether the virus DNA is detected - not wether it is active/ > inactive. It may not be 100% but it gives me an indication. My > result was negative. > > This result is a doubled edge sword. Great I don't have the virus > but what is causing my CFS at least I can put my energy and focus on > other areas and not just sit an wait to be tested/have my life in > other peoples hands while red tape is being sorted for licensed > testing I can use. As we know there is so much out of balance in the > body with cfs - even if XMRV is the cause there is still going to be > a lot of mopping up to do. > > Thanks > crusaderD > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 I agree with Marcia... That is EXACTLY " why " WPI is negotiating with other labs in other countries so that they can ALL be using the same techniques, methods and strains of XMRV so they KNOW the results " will be Valid " .. Why pay money to the many places that are trying to " make money " on us cuz they know we are desperate? Quality tests take time and if you try to rush things.. you get what you pay for.. Junk. What's a few month's when we have had this for 22 years already? Can we all please have a little " common sense " here please? From: Marcia on <mmorrison@...> Subject: Re: XMRV testing Date: Saturday, December 26, 2009, 11:33 AM Dear crusaderD, I would not take a " negative " result from Coperative Diagnostics as the final word. I am part of a " cohort " that was accepted as a study group by CD--moms with CFS and their children on the autism spectrum. When our results came back last week, *all* of the results were negative. We find this odd, as statistically, going by the WPI results, there should have been at least a few positives. There's been some discussion over on the XMRV-Autism group about whether or not the CD test is reliable; I think it still remains to be seen. The only test I would trust at this point would be the ones done (more than one type of test was used) for the people in the WPI study. Marcia on in Salem, Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2009 Report Share Posted December 27, 2009 I too was negative on the test from cooperative diagnostics so I guess I will wait until the standarized one comes out. joyce kaye > > From: Marcia on <mmorrison@...> > Subject: Re: XMRV testing > > Date: Saturday, December 26, 2009, 11:33 AM > > > > > > > > > > > > > > > > > > Dear crusaderD, > > > > I would not take a " negative " result from Coperative Diagnostics as > > the final word. I am part of a " cohort " that was accepted as a study > > group by CD--moms with CFS and their children on the autism spectrum. > > When our results came back last week, *all* of the results were > > negative. We find this odd, as statistically, going by the WPI > > results, there should have been at least a few positives. There's been > > some discussion over on the XMRV-Autism group about whether or not the > > CD test is reliable; I think it still remains to be seen. The only > > test I would trust at this point would be the ones done (more than one > > type of test was used) for the people in the WPI study. > > > > Marcia on > > in Salem, Massachusetts > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 everyone i have come across who tested with cooperative has been " negative " ..... i cannot believe so many people fell for it. ________________________________ From: joyce <jamkaye@...> Sent: Sun, December 27, 2009 2:53:11 PM Subject: Re: XMRV testing  I too was negative on the test from cooperative diagnostics so I guess I will wait until the standarized one comes out. joyce kaye > > From: Marcia on <mmorrison@. ..> > Subject: Re: XMRV testing > > Date: Saturday, December 26, 2009, 11:33 AM > > > > > > > >  > > > > > > > > > > Dear crusaderD, > > > > I would not take a " negative " result from Coperative Diagnostics as > > the final word. I am part of a " cohort " that was accepted as a study > > group by CD--moms with CFS and their children on the autism spectrum. > > When our results came back last week, *all* of the results were > > negative. We find this odd, as statistically, going by the WPI > > results, there should have been at least a few positives. There's been > > some discussion over on the XMRV-Autism group about whether or not the > > CD test is reliable; I think it still remains to be seen. The only > > test I would trust at this point would be the ones done (more than one > > type of test was used) for the people in the WPI study. > > > > Marcia on > > in Salem, Massachusetts > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 how much did this test cost you? > > > > From: Marcia on <mmorrison@> > > Subject: Re: XMRV testing > > > > Date: Saturday, December 26, 2009, 11:33 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Dear crusaderD, > > > > > > > > I would not take a " negative " result from Coperative Diagnostics as > > > > the final word. I am part of a " cohort " that was accepted as a study > > > > group by CD--moms with CFS and their children on the autism spectrum. > > > > When our results came back last week, *all* of the results were > > > > negative. We find this odd, as statistically, going by the WPI > > > > results, there should have been at least a few positives. There's been > > > > some discussion over on the XMRV-Autism group about whether or not the > > > > CD test is reliable; I think it still remains to be seen. The only > > > > test I would trust at this point would be the ones done (more than one > > > > type of test was used) for the people in the WPI study. > > > > > > > > Marcia on > > > > in Salem, Massachusetts > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 I'm wondering how many people have gotten test results back from VIP Dx labs and if their results were positive or negative? VIP Dx told me that they recommend people be off anti-virals for 15 to 30 days before taking the test, but I've not seen that info anywhere (including not from my doc who wanted me to do the test). Just curious about results from VIP Dx. On Mon, Dec 28, 2009 at 9:57 AM, DonnaK <donnaskuhn@...> wrote: > > > how much did this test cost you? > > > > > > > > From: Marcia on <mmorrison@> > > > Subject: Re: XMRV testing > > > <%40> > > > Date: Saturday, December 26, 2009, 11:33 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Dear crusaderD, > > > > > > > > > > > > I would not take a " negative " result from Coperative Diagnostics as > > > > > > the final word. I am part of a " cohort " that was accepted as a study > > > > > > group by CD--moms with CFS and their children on the autism spectrum. > > > > > > When our results came back last week, *all* of the results were > > > > > > negative. We find this odd, as statistically, going by the WPI > > > > > > results, there should have been at least a few positives. There's been > > > > > > some discussion over on the XMRV-Autism group about whether or not the > > > > > > CD test is reliable; I think it still remains to be seen. The only > > > > > > test I would trust at this point would be the ones done (more than one > > > > > > type of test was used) for the people in the WPI study. > > > > > > > > > > > > Marcia on > > > > > > in Salem, Massachusetts > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 In this particular case, the only cost to the participants was the expense of the blood draw and the shipping fees to get the samples to ative Diagnostics. M. On Dec 28, 2009, at 12:57 PM, DonnaK wrote: > how much did this test cost you? > > > > > > > > From: Marcia on <mmorrison@> > > > Subject: Re: XMRV testing > > > > > > Date: Saturday, December 26, 2009, 11:33 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Dear crusaderD, > > > > > > > > > > > > I would not take a " negative " result from Coperative Diagnostics > as > > > > > > the final word. I am part of a " cohort " that was accepted as a > study > > > > > > group by CD--moms with CFS and their children on the autism > spectrum. > > > > > > When our results came back last week, *all* of the results were > > > > > > negative. We find this odd, as statistically, going by the WPI > > > > > > results, there should have been at least a few positives. > There's been > > > > > > some discussion over on the XMRV-Autism group about whether or > not the > > > > > > CD test is reliable; I think it still remains to be seen. The only > > > > > > test I would trust at this point would be the ones done (more > than one > > > > > > type of test was used) for the people in the WPI study. > > > > > > > > > > > > Marcia on > > > > > > in Salem, Massachusetts > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 that isn't fair! VIP Dx did not tell me that. i stopped valcyte for about 2 weeks but not valtrex. damn! ________________________________ From: Pwr2Heal <pwr2heal@...> @... Sent: Mon, December 28, 2009 1:32:22 PM Subject: Re: Re: XMRV testing  I'm wondering how many people have gotten test results back from VIP Dx labs and if their results were positive or negative? VIP Dx told me that they recommend people be off anti-virals for 15 to 30 days before taking the test, but I've not seen that info anywhere (including not from my doc who wanted me to do the test). Just curious about results from VIP Dx. On Mon, Dec 28, 2009 at 9:57 AM, DonnaK <donnaskuhn (DOT) com> wrote: > > > how much did this test cost you? > > > > > > > > From: Marcia on <mmorrison@> > > > Subject: Re: XMRV testing > > > <% 40groups. com> > > > Date: Saturday, December 26, 2009, 11:33 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Dear crusaderD, > > > > > > > > > > > > I would not take a " negative " result from Coperative Diagnostics as > > > > > > the final word. I am part of a " cohort " that was accepted as a study > > > > > > group by CD--moms with CFS and their children on the autism spectrum. > > > > > > When our results came back last week, *all* of the results were > > > > > > negative. We find this odd, as statistically, going by the WPI > > > > > > results, there should have been at least a few positives. There's been > > > > > > some discussion over on the XMRV-Autism group about whether or not the > > > > > > CD test is reliable; I think it still remains to be seen. The only > > > > > > test I would trust at this point would be the ones done (more than one > > > > > > type of test was used) for the people in the WPI study. > > > > > > > > > > > > Marcia on > > > > > > in Salem, Massachusetts > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 I was also upset that my doctor hadn't told me about stopping antivirals. I don't know (yet) if he didn't know or just didn't tell me. I hadn't seen this info anywhere and was surprised when VIP Dx told me this. I wanted to bring this up on the board so that more people are aware and anyone planning on doing the test can stop antivirals beforehand. Have you gotten your results back yet, Sue? My other doctor told me I may get a false negative due to the antivirals I've been on. I don't have my results back yet. If my result is negative it'll be very frustrating. On Mon, Dec 28, 2009 at 1:28 PM, Sue <suebackagain123@...>wrote: > > > that isn't fair! VIP Dx did not tell me that. i stopped valcyte for about 2 > weeks but not valtrex. damn! > > ________________________________ > From: Pwr2Heal <pwr2heal@... <pwr2heal%40gmail.com>> > @...<%40groups..com> > Sent: Mon, December 28, 2009 1:32:22 PM > Subject: Re: Re: XMRV testing > > > I'm wondering how many people have gotten test results back from VIP Dx > labs > and if their results were positive or negative? VIP Dx told me that they > recommend people be off anti-virals for 15 to 30 days before taking the > test, but I've not seen that info anywhere (including not from my doc who > wanted me to do the test). > > Just curious about results from VIP Dx. > > On Mon, Dec 28, 2009 at 9:57 AM, DonnaK <donnaskuhn (DOT) com> wrote: > > > > > > > how much did this test cost you? > > > > > > > > > > > > From: Marcia on <mmorrison@> > > > > Subject: Re: XMRV testing > > > > <% > 40groups. com> > > > > Date: Saturday, December 26, 2009, 11:33 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Dear crusaderD, > > > > > > > > > > > > > > > > I would not take a " negative " result from Coperative Diagnostics as > > > > > > > > the final word. I am part of a " cohort " that was accepted as a study > > > > > > > > group by CD--moms with CFS and their children on the autism spectrum. > > > > > > > > When our results came back last week, *all* of the results were > > > > > > > > negative. We find this odd, as statistically, going by the WPI > > > > > > > > results, there should have been at least a few positives. There's > been > > > > > > > > some discussion over on the XMRV-Autism group about whether or not > the > > > > > > > > CD test is reliable; I think it still remains to be seen. The only > > > > > > > > test I would trust at this point would be the ones done (more than > one > > > > > > > > type of test was used) for the people in the WPI study. > > > > > > > > > > > > > > > > Marcia on > > > > > > > > in Salem, Massachusetts > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 dr mikovits told me directly i did not have to stop valtrex. jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2009 Report Share Posted December 29, 2009 My test was done early by CD and it cost nothing except for shipping and the blood draw.joyce > > > > > > From: Marcia on <mmorrison@> > > > Subject: Re: XMRV testing > > > > > > Date: Saturday, December 26, 2009, 11:33 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Dear crusaderD, > > > > > > > > > > > > I would not take a " negative " result from Coperative Diagnostics as > > > > > > the final word. I am part of a " cohort " that was accepted as a study > > > > > > group by CD--moms with CFS and their children on the autism spectrum. > > > > > > When our results came back last week, *all* of the results were > > > > > > negative. We find this odd, as statistically, going by the WPI > > > > > > results, there should have been at least a few positives. There's been > > > > > > some discussion over on the XMRV-Autism group about whether or not the > > > > > > CD test is reliable; I think it still remains to be seen. The only > > > > > > test I would trust at this point would be the ones done (more than one > > > > > > type of test was used) for the people in the WPI study. > > > > > > > > > > > > Marcia on > > > > > > in Salem, Massachusetts > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2009 Report Share Posted December 30, 2009 Marcia, Why do you think the original WPI test is more trustworthy? Because CD produced a lot of negative findings? I don't see the connection, in this type of science EVERY lab's results are only preliminary until a lot of confirmation and replication studies have been run using many different method. If XMRV is present in 98% of PWC as WPI claims, a wide variety of testing processes conducted at many labs should all be easily finding the virus. If outside labs can not duplicate those results, I don't think we can automatically assume that all the replication studies are wrong. In fact, it is WPI's work that will come under scrutiny. I was also part of the CD study, and had a negative result. And I have spent a LOT of time reviewing their testing process, as well as learning about PCR testing in general. Also, I have studied some of the past research into MuLV antibody testing, and have come to the conclusion that there is no reason to trust the WPI results over other labs, including CD, the CDC, or other replication studies. We have a very long wait ahead of us, there will have to be parallel studies (both tests being run side-by-side) and that will take some time. There is every possibility that it is WPI who is wrong. The fact that WPI presented such a complete and simple explanation for CFS, and the fact that they have helped raise awareness of CFS has nothing to do with whether or not their science will hold up. --Kurt > > > Hi, > > > > I live in Australia and at present WPI licensed lab VIP are not > > doing testing outside US/Canada they wrote and told me it was due to > > being inundated with requests, that they are running a 4 - 6 wk back > > order from patients on their list to receive kits and those patients > > come first. That the list is getting longer. So it is unlikely > > anyone outside US/Canada will be tested for who knows how long by > > VIP. But was told to check again in February to see if they can > > accommodate frozen samples at that time > > > > I was told for anyone reading this in Europe that RED Laboratories > > in Belgium is working on licensing the technology from Whittemore > > . That will take place within the next several months. > > > > They told me they have had patients from Australia visiting the USA > > and they will accept samples while they are in the USA . > > > > I didn't want to wait and just sit and do nothing until whenever > > those tests become available. So I did the test offered by > > ative Diagnostics - XMRV Real Time PCR - I think it determines > > whether the virus DNA is detected - not wether it is active/ > > inactive. It may not be 100% but it gives me an indication. My > > result was negative. > > > > This result is a doubled edge sword. Great I don't have the virus > > but what is causing my CFS at least I can put my energy and focus on > > other areas and not just sit an wait to be tested/have my life in > > other peoples hands while red tape is being sorted for licensed > > testing I can use. As we know there is so much out of balance in the > > body with cfs - even if XMRV is the cause there is still going to be > > a lot of mopping up to do. > > > > Thanks > > crusaderD > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2009 Report Share Posted December 30, 2009 Dear Sue, Unless you work at WPI you would have NO WAY to know what the research results even ARE... They do NOT do the Public tests at this point. The PUBLIC tests are being done by VipDx and they are just NOW sending out the test kits..and it takes time to run the test... I would be VERY Careful when you make statements to be sure to quote the article that you are getting the info from.... or else you are just passing on a rumor.. Aside from that... since I worked for a hospital for 17 years back in the beginning days of HIV... (not to mention less Serious easier tests...) " OUR " old inside Rule of Thumb was.. " a test is ONLY as good as the mood the tech is in on the day they run your test.. " If it's an IMPORTANT test... always have it done at least Twice.. if you get 2 different results have it done a 3rd time... AND in the beginning of MANY of these tests... if the procedures are not followed EXACTLY it Can be very easy to get a wrong result. Granted many things have changed in the last 25 years..but if humans are still involved in doing your tests..then these rules apply... IMHO. Please quote articles when possible OK? Thanks... From: shakerz25 <shakerz25@...> Subject: Re: XMRV testing: VIP 33% possibly wrong? Date: Tuesday, December 29, 2009, 12:27 PM " i understand there is a 33% chance of a false negative even at WPI. " Where did you hear that? That is extremely important, it seems to me. Imagine if HIV tests were routinely 33% inaccurate at this point. > > from the message boards i read, no one has tested positive from ative Dx. i personally would not get tested there. i understand there is a 33% chance of a false negative even at WPI. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2009 Report Share Posted December 30, 2009 i have yet to run into anyone who got a positive result from CD. you don't think this is suspicious? ________________________________ From: KurtR1351 <kurtrowley@...> Sent: Tue, December 29, 2009 7:01:44 PM Subject: Re: XMRV testing  Marcia, Why do you think the original WPI test is more trustworthy? Because CD produced a lot of negative findings? I don't see the connection, in this type of science EVERY lab's results are only preliminary until a lot of confirmation and replication studies have been run using many different method. If XMRV is present in 98% of PWC as WPI claims, a wide variety of testing processes conducted at many labs should all be easily finding the virus. If outside labs can not duplicate those results, I don't think we can automatically assume that all the replication studies are wrong. In fact, it is WPI's work that will come under scrutiny. I was also part of the CD study, and had a negative result. And I have spent a LOT of time reviewing their testing process, as well as learning about PCR testing in general. Also, I have studied some of the past research into MuLV antibody testing, and have come to the conclusion that there is no reason to trust the WPI results over other labs, including CD, the CDC, or other replication studies. We have a very long wait ahead of us, there will have to be parallel studies (both tests being run side-by-side) and that will take some time. There is every possibility that it is WPI who is wrong. The fact that WPI presented such a complete and simple explanation for CFS, and the fact that they have helped raise awareness of CFS has nothing to do with whether or not their science will hold up. --Kurt > > > Hi, > > > > I live in Australia and at present WPI licensed lab VIP are not > > doing testing outside US/Canada they wrote and told me it was due to > > being inundated with requests, that they are running a 4 - 6 wk back > > order from patients on their list to receive kits and those patients > > come first. That the list is getting longer. So it is unlikely > > anyone outside US/Canada will be tested for who knows how long by > > VIP. But was told to check again in February to see if they can > > accommodate frozen samples at that time > > > > I was told for anyone reading this in Europe that RED Laboratories > > in Belgium is working on licensing the technology from Whittemore > > . That will take place within the next several months. > > > > They told me they have had patients from Australia visiting the USA > > and they will accept samples while they are in the USA . > > > > I didn't want to wait and just sit and do nothing until whenever > > those tests become available. So I did the test offered by > > ative Diagnostics - XMRV Real Time PCR - I think it determines > > whether the virus DNA is detected - not wether it is active/ > > inactive. It may not be 100% but it gives me an indication. My > > result was negative. > > > > This result is a doubled edge sword. Great I don't have the virus > > but what is causing my CFS at least I can put my energy and focus on > > other areas and not just sit an wait to be tested/have my life in > > other peoples hands while red tape is being sorted for licensed > > testing I can use. As we know there is so much out of balance in the > > body with cfs - even if XMRV is the cause there is still going to be > > a lot of mopping up to do. > > > > Thanks > > crusaderD > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2009 Report Share Posted December 30, 2009 Dear Kurt, My take on it is merely that IF the CFS populations are similar, AND the testing procedure is the same, THEN the percentages should be similar. If the results/ percentages are very different, then either the populations are not close enough to be statistically useful, or the testing procedure is not the same (and therefore might not give the same results). My only information about the WPI testing is that they ran not just one, but several types of test to come up with their data. From what I have read, they were reasonably careful with their procedures and analysis of results, as far as scientific research goes. I absolutely agree that more research and calibration needs to be done. I'm glad you have been reviewing the various types of testing; the more eyes looking at what's going on the better. Best wishes, Marcia on in Salem, Massachusetts On Dec 29, 2009, at 7:01 PM, KurtR1351 wrote: > > > Marcia, > Why do you think the original WPI test is more trustworthy? Because > CD produced a lot of negative findings? I don't see the connection, > in this type of science EVERY lab's results are only preliminary > until a lot of confirmation and replication studies have been run > using many different method. If XMRV is present in 98% of PWC as WPI > claims, a wide variety of testing processes conducted at many labs > should all be easily finding the virus. If outside labs can not > duplicate those results, I don't think we can automatically assume > that all the replication studies are wrong. In fact, it is WPI's > work that will come under scrutiny. > > I was also part of the CD study, and had a negative result. And I > have spent a LOT of time reviewing their testing process, as well as > learning about PCR testing in general. Also, I have studied some of > the past research into MuLV antibody testing, and have come to the > conclusion that there is no reason to trust the WPI results over > other labs, including CD, the CDC, or other replication studies. We > have a very long wait ahead of us, there will have to be parallel > studies (both tests being run side-by-side) and that will take some > time. > > There is every possibility that it is WPI who is wrong. The fact > that WPI presented such a complete and simple explanation for CFS, > and the fact that they have helped raise awareness of CFS has > nothing to do with whether or not their science will hold up. > > --Kurt > > > > > > > Hi, > > > > > > I live in Australia and at present WPI licensed lab VIP are not > > > doing testing outside US/Canada they wrote and told me it was > due to > > > being inundated with requests, that they are running a 4 - 6 wk > back > > > order from patients on their list to receive kits and those > patients > > > come first. That the list is getting longer. So it is unlikely > > > anyone outside US/Canada will be tested for who knows how long by > > > VIP. But was told to check again in February to see if they can > > > accommodate frozen samples at that time > > > > > > I was told for anyone reading this in Europe that RED Laboratories > > > in Belgium is working on licensing the technology from Whittemore > > > . That will take place within the next several months. > > > > > > They told me they have had patients from Australia visiting the > USA > > > and they will accept samples while they are in the USA . > > > > > > I didn't want to wait and just sit and do nothing until whenever > > > those tests become available. So I did the test offered by > > > ative Diagnostics - XMRV Real Time PCR - I think it > determines > > > whether the virus DNA is detected - not wether it is active/ > > > inactive. It may not be 100% but it gives me an indication. My > > > result was negative. > > > > > > This result is a doubled edge sword. Great I don't have the virus > > > but what is causing my CFS at least I can put my energy and > focus on > > > other areas and not just sit an wait to be tested/have my life in > > > other peoples hands while red tape is being sorted for licensed > > > testing I can use. As we know there is so much out of balance in > the > > > body with cfs - even if XMRV is the cause there is still going > to be > > > a lot of mopping up to do. > > > > > > Thanks > > > crusaderD > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2009 Report Share Posted December 30, 2009 > > i have yet to run into anyone who got a positive result from CD. you don't think this is suspicious? All that means is that CD is not finding XMRV in regular PWC. I do not think that is suspicious at all because I have believed WPI when they said that XMRV was a preliminary finding that might or might not hold up. It does not appear to be holding up. Why is that so hard to believe? This happens all the time in this type of scientific research, including hundreds of studies looking for retroviruses to explain various diseases. Always there is some preliminary positive finding that does not hold up under close scrutiny of replication studies. Also, I know of other labs that are not finding XMRV in CFS. Give it time, we just have to wait. --Kurt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2009 Report Share Posted December 30, 2009 > > Dear Kurt, > > My take on it is merely that IF the CFS populations are similar, AND > the testing procedure is the same, THEN the percentages should be > similar. If the results/ percentages are very different, then either > the populations are not close enough to be statistically useful, or > the testing procedure is not the same (and therefore might not give > the same results). Marcia, I agree with this completely, and would add, that the testing procedures are NOT the same. Different types of PCR tests were used. So getting different results is not surprising. The CD test was far more sensitive and should have picked up any XMRV if it was in your group that was tested. And CD has a well-calibrated test that has been validated with positive samples. > My only information about the WPI testing is that they ran not just > one, but several types of test to come up with their data. From what I > have read, they were reasonably careful with their procedures and > analysis of results, as far as scientific research goes. This is where there is a potential problem. The testing looked good to you, who I assume are not a medical test development professional. That is not hard, to portray a scientific experiment to laymen as credible. The issue is whether their procedures looked good to those who understand testing. And that remains to be seen. There are many possible questions about the WPI study. > I absolutely agree that more research and calibration needs to be > done. I'm glad you have been reviewing the various types of testing; > the more eyes looking at what's going on the better. > > Best wishes, > > Marcia on > in Salem, Massachusetts Thanks, unfortunately, I think the truth of this situation could take several years to be established. Meanwhile there are plenty of other very good directions to look for help with CFS. --Kurt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2009 Report Share Posted December 30, 2009 on the pheonix rising message boards, there have been several positive XMRV findings from WPI but not one was positive from CD....come on! ________________________________ From: KurtR1351 <kurtrowley@...> Sent: Wed, December 30, 2009 2:11:23 AM Subject: Re: XMRV testing  > > Dear Kurt, > > My take on it is merely that IF the CFS populations are similar, AND > the testing procedure is the same, THEN the percentages should be > similar. If the results/ percentages are very different, then either > the populations are not close enough to be statistically useful, or > the testing procedure is not the same (and therefore might not give > the same results). Marcia, I agree with this completely, and would add, that the testing procedures are NOT the same. Different types of PCR tests were used. So getting different results is not surprising. The CD test was far more sensitive and should have picked up any XMRV if it was in your group that was tested. And CD has a well-calibrated test that has been validated with positive samples. > My only information about the WPI testing is that they ran not just > one, but several types of test to come up with their data. From what I > have read, they were reasonably careful with their procedures and > analysis of results, as far as scientific research goes. This is where there is a potential problem. The testing looked good to you, who I assume are not a medical test development professional. That is not hard, to portray a scientific experiment to laymen as credible. The issue is whether their procedures looked good to those who understand testing. And that remains to be seen. There are many possible questions about the WPI study. > I absolutely agree that more research and calibration needs to be > done. I'm glad you have been reviewing the various types of testing; > the more eyes looking at what's going on the better. > > Best wishes, > > Marcia on > in Salem, Massachusetts Thanks, unfortunately, I think the truth of this situation could take several years to be established. Meanwhile there are plenty of other very good directions to look for help with CFS. --Kurt __________________________________________________________________ The new Internet Explorer® 8 - Faster, safer, easier. Optimized for Get it Now for Free! at http://downloads./ca/internetexplorer/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2009 Report Share Posted December 31, 2009 > > on the pheonix rising message boards, there have been several positive XMRV findings from WPI but not one was positive from CD....come on! > Sue, So what is your point? If there are problems with the WPI testing process that is what would be expected, no positives from other labs. I do not believe we can just assume that because the WPI study was published in Science that therefore XMRV's presence is proven and anyone who does not find it is wrong. The opposite might also be true, if the Science study was somehow wrong then replication studies and outside labs would not find XMRV. This is not for us to decide, outside researcher have to run validation studies with their own tests and samples. This type of issue comes up all the time in this type of research, there have been many prior attempts to link retroviruses with illnesses that looked good at first but could not be replicated. That is why replication studies are so important. And if XMRV is as pervasive as WPI claims in CFS, it should be relatively simple to find. I have more confidence in CD's testing than in WPI or VIP's testing, because CD is a test developer and they know that business. As far as I have heard, WPI and VIP are not test developers, they probably are using XMRV tests from other labs. So there really is no reason to favor their results over someone else's at this point. --Kurt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2010 Report Share Posted January 1, 2010 if there is a problem with the WPI test, why are they getting some positives there? ________________________________ From: KurtR1351 <kurtrowley@...> Sent: Thu, December 31, 2009 3:51:01 PM Subject: Re: XMRV testing  > > on the pheonix rising message boards, there have been several positive XMRV findings from WPI but not one was positive from CD....come on! > Sue, So what is your point? If there are problems with the WPI testing process that is what would be expected, no positives from other labs. I do not believe we can just assume that because the WPI study was published in Science that therefore XMRV's presence is proven and anyone who does not find it is wrong. The opposite might also be true, if the Science study was somehow wrong then replication studies and outside labs would not find XMRV. This is not for us to decide, outside researcher have to run validation studies with their own tests and samples. This type of issue comes up all the time in this type of research, there have been many prior attempts to link retroviruses with illnesses that looked good at first but could not be replicated. That is why replication studies are so important. And if XMRV is as pervasive as WPI claims in CFS, it should be relatively simple to find. I have more confidence in CD's testing than in WPI or VIP's testing, because CD is a test developer and they know that business. As far as I have heard, WPI and VIP are not test developers, they probably are using XMRV tests from other labs. So there really is no reason to favor their results over someone else's at this point. --Kurt __________________________________________________________________ Looking for the perfect gift? Give the gift of Flickr! http://www.flickr.com/gift/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2010 Report Share Posted January 1, 2010 Kurt, The WPI results have in effect already been replicated by the NCI and the Cleveland Clinic Foundation. Of course, the results need to be confirmed by more researchers but they have already been replicated by very respectable researchers. Let's all wait to see how things unfold before declaring that WPI is correct or incorrect in their study. > And if XMRV is as pervasive as WPI claims in CFS, it should be relatively simple to find. I don't understand this line of thinking at all. If it is true that all people with CFS have XMRV, why would that mean that it's easy to find via testing? Pervasiveness does not equal easy to find via testing. Most infections, especially chronic infections, are difficult to test for. > I have more confidence in CD's testing than in WPI or VIP's testing, because CD is a test developer and they know that business. Just because CD is a test developer doesn't mean they've got the XMRV test all figured out yet. It's far too early in the game for them to have the testing all figured out, especially since as far as I know they aren't working with anyone related to WPI who has knowledge of how the testing for XMRV was done. WPI apparently developed new techniques that many of the retrovirologists at the Cleveland conference were very impressed by, so if a lab isn't working with someone connected to WPI I seriously doubt they've got a handle on how to accurately test for XMRV at this stage of the game. WPI has Dr. Lombardi, the primary investigator and first author of the study published in Science, as their Director of Operations for the licensing and development of their XMRV test. Dr. Lombardi is confirming the VIP Dx test results, so at this stage of the game it would seem that it might be a better bet to favor VIP Dx over any other lab, as VIP Dx is the only lab that is licensed for the XMRV test. On Thu, Dec 31, 2009 at 12:51 PM, KurtR1351 <kurtrowley@...> wrote: > > > > > > > > > on the pheonix rising message boards, there have been several positive > XMRV findings from WPI but not one was positive from CD....come on! > > > > Sue, > So what is your point? If there are problems with the WPI testing process > that is what would be expected, no positives from other labs. > > I do not believe we can just assume that because the WPI study was > published in Science that therefore XMRV's presence is proven and anyone who > does not find it is wrong. The opposite might also be true, if the Science > study was somehow wrong then replication studies and outside labs would not > find XMRV. This is not for us to decide, outside researcher have to run > validation studies with their own tests and samples. > > This type of issue comes up all the time in this type of research, there > have been many prior attempts to link retroviruses with illnesses that > looked good at first but could not be replicated. That is why replication > studies are so important. And if XMRV is as pervasive as WPI claims in CFS, > it should be relatively simple to find. I have more confidence in CD's > testing than in WPI or VIP's testing, because CD is a test developer and > they know that business. As far as I have heard, WPI and VIP are not test > developers, they probably are using XMRV tests from other labs. So there > really is no reason to favor their results over someone else's at this > point. > --Kurt > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2010 Report Share Posted January 1, 2010 amy...you mentioned that the results have been replicated at cleveland and NCI...may i ask where you heard that? i have not heard that! thanks sue ________________________________ From: Pwr2Heal <pwr2heal@...> Sent: Fri, January 1, 2010 1:29:12 AM Subject: Re: Re: XMRV testing  Kurt, The WPI results have in effect already been replicated by the NCI and the Cleveland Clinic Foundation. Of course, the results need to be confirmed by more researchers but they have already been replicated by very respectable researchers. Let's all wait to see how things unfold before declaring that WPI is correct or incorrect in their study. > And if XMRV is as pervasive as WPI claims in CFS, it should be relatively simple to find. I don't understand this line of thinking at all. If it is true that all people with CFS have XMRV, why would that mean that it's easy to find via testing? Pervasiveness does not equal easy to find via testing. Most infections, especially chronic infections, are difficult to test for. > I have more confidence in CD's testing than in WPI or VIP's testing, because CD is a test developer and they know that business. Just because CD is a test developer doesn't mean they've got the XMRV test all figured out yet. It's far too early in the game for them to have the testing all figured out, especially since as far as I know they aren't working with anyone related to WPI who has knowledge of how the testing for XMRV was done. WPI apparently developed new techniques that many of the retrovirologists at the Cleveland conference were very impressed by, so if a lab isn't working with someone connected to WPI I seriously doubt they've got a handle on how to accurately test for XMRV at this stage of the game. WPI has Dr. Lombardi, the primary investigator and first author of the study published in Science, as their Director of Operations for the licensing and development of their XMRV test. Dr.. Lombardi is confirming the VIP Dx test results, so at this stage of the game it would seem that it might be a better bet to favor VIP Dx over any other lab, as VIP Dx is the only lab that is licensed for the XMRV test.. On Thu, Dec 31, 2009 at 12:51 PM, KurtR1351 <kurtrowleygmail (DOT) com> wrote: > > > > > > > > > on the pheonix rising message boards, there have been several positive > XMRV findings from WPI but not one was positive from CD....come on! > > > > Sue, > So what is your point? If there are problems with the WPI testing process > that is what would be expected, no positives from other labs. > > I do not believe we can just assume that because the WPI study was > published in Science that therefore XMRV's presence is proven and anyone who > does not find it is wrong. The opposite might also be true, if the Science > study was somehow wrong then replication studies and outside labs would not > find XMRV. This is not for us to decide, outside researcher have to run > validation studies with their own tests and samples. > > This type of issue comes up all the time in this type of research, there > have been many prior attempts to link retroviruses with illnesses that > looked good at first but could not be replicated. That is why replication > studies are so important. And if XMRV is as pervasive as WPI claims in CFS, > it should be relatively simple to find. I have more confidence in CD's > testing than in WPI or VIP's testing, because CD is a test developer and > they know that business. As far as I have heard, WPI and VIP are not test > developers, they probably are using XMRV tests from other labs. So there > really is no reason to favor their results over someone else's at this > point. > --Kurt > > > Quote Link to comment Share on other sites More sharing options...
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