Hi, I just went through it all and tried to fill in what I could of the gaps... sorry if I've duplicated any work here...
Question: Yeah cos I'm wondering... I’ve met a lot of other CFS patients like me who have high cholesterol [inaudible] correlation [inaudible]
Judy: Yeah, and nobody’s ever looked. It’s certainly something they could look at and correlate. I can’t think of a reason why. You might presume you’d have less if you’re using it up for another purpose.
Question: inaudible
Section 7
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. It’s called Niemann Pick Disease. It’s also known as Childhood Alzheimers. (15:11)
And these kids, you know it’s a cholesterol metabolism disease where you actually have it in your brain, and you’ll actually die of it because if you get too much cholesterol it messes up your brain and everything.
And those kids have been treated by James Hildreth at Vanderbilt in Nashville, Tennessee, at a small college, I can’t remember right now. And he’s using cyclodextran and some of the cholesterol drugs. He’s actually an HIV drug developer, and the kids are showing some improvement when he modulates that pathway and stops the virus from entering or exiting the cell, so we don’t know anything about XMRV. We just know what other viruses do so he is having some success [inaudible] thinking there’s some opportunities there.
Q: inaudible
Judy: Yeah, we’re working with him as well. That’s why I didn't list all the collaborators at the United States. We’re providing reagents and whatever intellectual knowledge we have and whatever physical abilities and instruments we have to these collaborative efforts as well.
Q: Until forthcoming therapies are established for those who have XMRV what are people doing to protect them inaudbile Are they taking immunomodulating therapies or whatever?
Judy - Some, as you know a lot of, some of what I showed you here that turn on/off switch suggests non-steroidal anti-inflammatories. So non-steroidal anti-inflammatories could well help. Things that will balance cortisol. Maybe... these are just thought processes... because you know inflammation turns on the virus, and I don’t know much about hormone therapies and how lowering hormone levels might help, but do know anecdotally that a lot of women in a particular time in their cycle get much much sicker and can’t get over it, so you might think of a real low… I do know in the laboratory progesterone really upregulates the virus, so if you have a birth control pill… and again I don’t really know anything about this... I’m not a physician... you might think about keeping the levels balanced and avoiding the fluctuation.
So certainly supplements can help a lot. Retroviruses cause a lot of oxidative stress. So things like N-acetylcysteine and glutathione, the detox type… People do take supplements. I know that a lot of people have had success with immune modulators, just helping their disease, or supplements, because they know about them. I caution against taking too much or taking a bunch of things.
Try to learn as much as you can, because supplements aren’t controlled by regulatory agencies, and therefore if you’re not using high quality you could actually be putting poisons in you, and since we don’t know much about the virus you could modulate the wrong way.
But things that upregulate NK cell function, and there are known compounds out there that do that, that are marketed in our state, so that could help you, so… I’m really not… We don’t know a lot about it, but that’s how people are actually starting to help themselves.
The other thing is to stay out of stressful situations. It’s hard to do. In fact, we’ve seen a lot of people get worse just with the stress of this discovery, which is sad. Just the stress of the discovery has people freaking out. They’re… The psychological… That’s why I want you to call me. Because we don’t want, “No, no! I have a retrovirus!” We want to talk to you because it’s serious and you can have untold…
Most people say, “Well…” (?) congratulating people when they come up positive, which is really strange… [laughter] Then they get really scared, because they don’t know anything about it. And we’re here as much as we can to help, but we don’t know anything about that retrovirus. All we can say is that… the same thing I’ve been saying today. If you know… I hope you will go home and say, “It’s not a mouse retrovirus. Retroviruses are not ubiquitous, and they’re not benign. So I have to think about those facts.” So it’s wide open.
The drug companies… the one thing, if you do get tested, and we know you’re positive, a confirmed positive -- we’ll get you into the earliest clinical trials. And they’ll have things pretty soon because all they have to do -- and it’s major Pharma -- all they have to do, and I've given them the reagents and the cell lines -- we’ve made several cell lines to make a lot of virus. And so we’ve given them those cell lines, and all they have to do is take something off the shelf that rationally might inhibit a particular, say, an integrase gene or another gene that’s conserved across the three retroviruses and know that they can see the efficiency, the efficacy and knockdown levels of the virus in the lab to levels, which they're the known blood levels of the drug can achieve, and they can submit and do the paperwork for a clinical trial. And it’s already known to be safe because it’s already passed Phase 1, or safety trials, in humans. So we will look at those first. And there are a number of companies who, as I say, they are high quality companies, and they are… they are more than interested. They are doing it now, and have been doing it since October.
Question: inaudible
Judy: We very much expect that some of the breast cancer incidence -- we hypothesize that inflammatory breast cancer a lot like what we saw with the inflammatory prostate -- but yes, it is a very real hypothesis because the incidence of breast cancer in young women that you’ve never used to see before, is rising at levels that suggest something environmental, and not necessarily genetic. We have had cancer in my family and you see young women that way, so it certainly is something that we’re looking at (?) … I would say we but it’s everybody but me, usually… it’s the National Cancer Institute. We’re also looking at lymphoma, because CLL (chronic lymphocytic lymphoma) is a lymphoma that [is a mesalymphoma?] and it’s also been going up and up, and it suggests to us some kind of role of an infectious nature, so we are looking at a number of lymphomas, with a group in New York, a group in Florida, and the Nevada Cancer Institute. I don’t have a breast cancer study set up… there’s actually…
Question: inaudible anti-viral
Judy: Anti-retroviral.
Question: inaudible vaccine theat could...
Judy: Yeah, a vaccine is a real opportunity, and we know that they still don’t have an HIV vaccine yet, that’s efficacious, but HIV is a complex retrovirus. So when you’re thinking about the reason why you have to take a flu vaccine every year, it’s because the virus changes. Well, an HIV virus in a person in a week will change too much… even... they call them quasi-species.
One of the really interesting things about these studies is we only isolate one thing out of these people. When we do the sequencing, it’s clean. We don’t isolate quasi-species. We don’t have the virus have these changes here in one week or one year… we have patient samples across dozens of years. We isolated XMRV from a 1984 plasma sample from a patient. So we got it in 2008 and we got it in 1984, which again suggests that the virus has been around at least 25 years and it might have a role in disease. But it’s not plausible, so yes indeed, it could play a role in other things… Did I answer the rest of that question?
Question: People with CFS have shown [inaudible] a lot of other studies. How are you certain that XMRV is causing immunosupression given that there are 8 other viruses [inaudible] positive expression [inaudible]
Judy: Well, there are a couple of things for that. First of all, we’re not certain of anything. As I said, it’s a hypothesis. It’s because of what I know about HIV, and HHV-8, so these herpes viruses, where it’s the underlying immune deficiency. The other viruses aren’t retroviruses, the other pathogens too, the bacteria, and they don’t live in your immune systems forever and replicate, have reservoirs. They’re across the board, so everybody’s infected. Probably 90% of this room has an EBV infection. But very few people express EBV, have chronic active EBV. That suggests that your immune system has something wrong with it. You could certainly go either way, but retroviruses don’t do that. And people that…
The CFS world has looked at any of those pathogens, so here’s chronic Lyme and here’s EBV and here’s… It’s never one place, something that unifies all of them. So it’s certainly a testable hypothesis, and that’s one of those things that will just happen. If you get an anti-retroviral and a chronic EBV goes away, and a lot of the symptoms go away… I’m not saying that the EBV doesn’t cause a lot of those symptoms. That’s what makes it so hard to figure out the disease. But if there’s an underlying immune deficiency that’s created… that’s not simply depression… but is getting worse every year, could be an explanation. So we’re happy that we can test that, because we do have different populations where we can see what the role of the co-infection is. We’ve never looked…
We’re looking with various groups at big cohorts of chronic Lyme and big cohorts of chronic EBV, Q Fever… things like that have been associated with… Jonathan Kerr, in fact, he’s working actively with us to see if it makes sense, that you need the combination or or you need one or the other, but… in the general population the incidence of XMRV is something between 2 and 4% right now, so… whereas it’s 90% of some of the herpes viruses, and most of us are exposed to these other pathogens, so I certainly don’t have an answer, but again, this gives us a testable hypothesis to look. All the way in the back.
Q: So I’m XMRV positive, okay? I’m also [inaudible]? Told that I have chronic Lyme. Explain the chronic Lyme connection.
Judy: Well, again, we don’t know -- it’s my thought that -- it’s my hypothesis that the Lyme Disease, especially in Lyme Disease, where it goes away and it’s almost cured and you only see some proteins that don’t necessarily; you know; it suggests that you’re almost cure it with the antibiotics but you have to keep the antibiotic there because … at a low level that your immune system can’t clear, and maybe it can’t clear it because you’ve created an immune deficiency with the retroviral infection. And we’ve never looked at a Lyme cohort yet. Again, we’re setting that up, but we don’t know the connection… But the hypothesis is, if we can treat the retrovirus, then the chronic Lyme will go away, is the thought. And you’ll treat with both.
Q: inaudible But he was untreated until about 7, and was bitten in Europe, and no-one understood that there. He had the rash on his legs and no one believed me.
Judy: Well, we can still clear the Lyme. For instance, in the AIDS population you treated the pneumocystis pneumonia… You treat it with the appropriate antibiotics because you don’t want the co-infections to kill him, and then do the anti-retrovirals too. There’s no reason… For instance, one of the questions that I got online was, “Well, I’m taking antivirals. Do I need to stop in order to get tested.” The answer is no. Because antivirals don’t target retroviruses. Retroviruses are very distinct viruses, so no, you don’t need to stop. We’ll still find the virus.
Q: But even 10 years later, and he was never treated. That was 10 years ago. You’re saying you would still treat for Lyme.
Judy: Yeah, well you probably should be at this point. Treated for both the Lyme and once we have a treatment, for the retrovirus.
Q: [inaudible] if XMRV is transmitted sexually, how come we're not seeing it in [inaudible]
Judy: The possibility is that it’s transmitted sexually, but we’ve never actually shown human-to-human transmission or caught the day when the other got sick. I don’t actually have an answer for that other than that I know that it might well be more in couples than we think, because maybe there’s a milder form of symptoms, so maybe this person’s a carrier. There’s still a lot we don't know about why prostate cancer and why CFS… what is the hormone component to that that so turns on the virus. They may be carriers and not know it, and certainly there’s a lot to study there to understand the gender differences in these diseases.
Q: [inaudible] So if XMRV turns out to be the cause, [inaudible] you could have the virus without having
Judy: [30:08 minutes]