Section 6
Judy Mikovits XMRV Q&A
Section 6. Video 2.
Male Questioner: [mostly inaudible] collaboratorsAnd you also brought more interest in the illnessprobably seen
Judy Mikovits: Youre welcome. [applause] Thats interesting, because the reviewers of the paper didnt really know what team they were [CFS is a] poorly understood and complex disease, so they went on to the virology. So they were able to get that reviewed without any kind of bias. And I think that as well. Yes, sir. [pointing]
MQ: What percentage of the population inaudible this virus?
Judy: We found it in 3.75 percent of the U.S. population and it was from across the United States. And in Japan they found it, just screening the blood supply of a couple thousand people, they found it in 1.7 percent. So we dont know the true prevalence.
MQ: So, only in 3.7 percent [inaudible] 96 percent of CFS.
Judy: No, thats the healthy population. Its in 97 (?) percent of the CFS population. I stuck this slide in here and Frank keeps taking it out, but you might have heard in the press after the paper came out that we didnt do all of the tests, all four tests, on all the people prior to the submission in May. We looked for evidence of infection, looked for the virus, to make the point. And it wasnt so much about the CFS.
So what we did after the paper was published, is we went back and we looked with all four assays for evidence of XMRV in those PCR negatives, because now we know that indeed those negative samples may have evidence of infection.
What we found was that 19 of the 33 had antibodies in the plasma. We found transmissible virus in the plasma of 33 of those people, and we looked at that latent virus because the company I used to work for here in Santa Barbara was called Epigenics, and it was developing methylation (?) for epigenetic silencing, and thats what (happens?) to viruses, and so we used Decitibine, which is a (dimethylating?) agent that opens up the genome and turns on the virus, and found that there was latent virus in ten of those people. And when we summed it all up and tabled it out, 99 of the 101 patients in the Science paper had evidence of XMRV infection, so
Another way that HIV/AIDS causality was established was by saying So the statistics of this means theres a 10 to the minus 35 chance that you had CFS in our study without having XMRV.
So Ill go back to the AIDS analogy. You can have HIV We wrote in the paper so its virtually impossible The editor took it out. We wrote, highly significant. The editor took it out. Finally we said, significant. But at any rate, 35 zero (??) would tell me that its virtually impossible to have had CFS without having had XMRV in this study.
So you can be infected with HIV and not have AIDS. We know that. People are being treated [and?] a lot more [???] controllers are coming out. But you cant have AIDS without having HIV. So if we can establish that XMRV is the [?] of events as HIV is to AIDS, which is what were trying to establish through that immune system understanding. So HIV, youll see [??] and it leads to AIDS. XMRV does what to the immune response? To the T, B and NK cells? Which leads to CFS. Because you cant To turn your question around, sir What about, the incidence of CFS in this country is 1 to 2 millionis that more or less what is said? ??? Canadian or Fukuda criteria? So I said 10 million people were infected. Where were the other 8 million? I showed you that only 20 percent [?] infected people were actually sick with one of those diseases.
So you can be infected with retroviruses and be carriers and not be sick.
So thats one reason to be tested so if you If there is a genetic susceptibility, which were looking to, may be a reason known as to why some people get sick and others dont. You certainly want to know if youre a carrier so you can protect your family.
Any other questions?
Female Questioner: (inaudible)
Judy: I dont work with the company. I know that hundreds So they only take samples two days a week because it takes three days to do that, so they dont Theyve done hundreds of samples in the last couple of months, and at least half of them are positive. Or 40 percent. And again, their doctors are looking doctors who are well versed in CFS, so theyre immediately sending off Dr. Cheny, Dr. Klimas, a doctor in Canada, Ellie Stein, maybe Susan Levine in New York. Im not sure because Im not Its illegal for me to know those data because of confidentiality between the patient and the physician. But quite a number and, yes, its there. CFS is a heterogeneous disease. I mean anything based on [??] So everything is not going to be this virus. [??] is a disease, and of course thats what were looking for, but I dont want our thirst for understanding how you can get sick and be sick forever and not have drug targets and not have diagnostics, so certainly there are going to be lots of people who have what MIGHT be called CFS today, and thats why weve also coined the term XAND, for XMRV-Associated Neuroimmune Disease, and that would be because weve seen
I had done a number of studies with family members prior to after the paper came out and prior to now where I just said theres a family member where the children have autism, theres fibromyalgia, theres cancer, and when you look, you find the virus. Weve found the virus in Atypical MS, so its a non-demyelinating MS, it looks like MS, it has some brain lesions like MS on SPECT scans, so Im sorry, Dan, I [? ? ? ], Im not a physician So just looking at families with different types of neuroimmune disease, we started seeing that the virus was there, and so thats why we started thinking it might be involved in a broader spectrum of neuroimmune diseases, with overlapping symptoms In fibromyalgia, pain is the primary symptom, but in a lot of people its body-numbing fatigue, so fatigue goes along with it.
In fact, Cindy Bateman, whos a fibromyalgia expert at the University of Utah She says its CFS with pain, fibromyalgia, and she can distinguish those who get better with fibro with certain therapies and compounds, and it takes the others away who dont respond at all, and puts some in the CFS group. So theres definitely going to be a lot of things where
Female Questioner: Inaudible
Judy: Yes, thats correct. I answered that question based on the samples that came through. XMRV is not going to be everywhere. Its 4%. But the people who are infected are sick.
Q: inaudible So if youre positive youre positive, but if youre negative its not necessarily negative.
Judy: Yes, thats correct. So I answered that question based on the samples that came through there. Everyone who is positive is definitely positive for having the virus. But we dont know what the people are, what the doctors sending in, so the people could not have that disease. So it could be a clearly, distinguishing delineating markerbiomarker-- or diagnostic at that point for various diseases. So a doctor might see a spectrum and say I dont know, Id better check. Because the earlier you catch itJust like cancer. Early detection Make sure the reservoir isMake sure you dont have that virus multiplying, and you can live a normal life. Dont let it get If we keep it down we keep the immune system strong.
Male questioner: So what youre saying is inaudible negative
Judy: Thats correct. If you do it by PCR. If you do it by VIPdx, at least right now, its running along the lines of Weve got the antibody, and weve got three of the four tests. Well license it to anyone. Were a non-profit institute, so... Everyone pays the same royalty, so any diagnostic company could do the gold standard. But right now if you test negative youre not necessarily negative, even at VIPdx. Because we want to go do that serology test. Maybe we cant find it But youve been exposed which would be a good thing because your levels are theoretically low and youve just now made the antibodies and so you can prevent disease, as we did with Magic Johnson. We dont know anything about the immune response. Yes?
Female questioner: inaudiblepregnantbabybreastfeeding
Judy: Well, it is theoretically possible. We dont know. Gamma retroviruses are vertically transmitted, so the egg and the sperm can be infected and you can actually vertically transmit gamma retroviruses. But this is the first Weve only studied it for two months. We dont know. Theoretically its possible. If we make those data it will certainly fall out when we start looking at family studies
The horizontal transmission is the only thing we know about right now. Because of course you have to find somebody who just gets infected in order to understand the disease. And since a diagnosis of CFS is being sick for six months, well, if only, if thats the only thing we can do is to stop that practice, making someone wreck their immune system or be totally sick for six months that would be a great thing with the discovery If thats the only thing that comes of it
Woman questioner: inaudible
Judy: It depends on where it is sent.
Woman questioner: take for example, if VIPdx
Judy: At VIPdx, as soon as we have the serology well go back and do all the negatives. We save them. So well go back and well We do isolate virus from all of them, but it costs a lot, so So if theyre really negative, we wont isolate virus either. Thats correct. At VIPdx were going all the way to virus isolation, because we want to make sure were sure.
Woman: So at a non VIPdx
Judy: Theyre only doing PCR. Thats wrong. [?] 60% probably. Very few people can find them. And participate in our research studies, because as I said, theres no hurry Theres no real reason to pay for a diagnostic test because you can participate in research studies and fund those studies and you get better data. Im not privy to those data. I cant answer the question of where they came from, where they are in the United States Both patients and doctors have to release that information, and thats not the fault of the diagnostic company. So the information is not useable that way. Now were pretty good right now. Weve been as responsive as can be. By the way, if anybody thinks they might have been in our repository If you simply e-mail me, or e-mail me at info@, Im
JudyM@WPinstitute.org, we did decode that study over the Christmas holidays, so we can tell you if youre positive or not. We can tell you whether or not you were in the study, because everybody Theres more than 500 samples in the repository. We pulled about a hundred of those for this study so we dont know if I dont remember everybody, but we did decode it so we know who the positives are at this point, and we are sending letters, but you have to ask me first for our insurance protocol, so just ask me and Ill tell you.
Question: inaudible
Judy: It actually uses the cell lipids to make its lipid membrane. Its an envelope virus and it has lipids, so it pulls cholesterol in to make its So it uses all the cell machinery, [it?] codes the enzymes and all the proteins and cells, so the lipid bilayer of the envelope virustheres lipids in it from your cells, and cholesterols a part of that.
Question: Ive met a lot of them inaudible blood problems inaudible
Judy: Yeah, and nobodys ever looked. Its certainly something they could look at and correlate. I cant think of a reason why. You might presume youd have less if youre using it up for another purpose.
Question: inaudible
Judy: We do have a little bit of data on that because we have two children in a study who have a genetic disease of cholesterol. Its called Nieman Picks Disease. Its also known as Childhood Alzheimers. (15:11)