Written by thefreeprisoner
Transcribed by thefreeprisoner
Bell: And perhaps we can open it up for questions.
One question only. So you’ve got to choose the best of those 20 questions…
Q1: You mentioned the pecentage of CFS patients with XMRV. Of healthies with XMRV, nobody knows the percentage of people with MS or ALS or… do you see what I’m saying? How many of them have XMRV?
Bell: Absolutely correct.
Q1: Where’s the specificitiy of…? [indaudible]
Bell: Well this would be an issue with XAND as a diagnostic classification. Let’s say that when the studies are done looking at MS, that half the people with MS have XMRV, well obviously it’s an important factor there. ALS; same thing, I’ve heard recently about some work that’s been done there…. we’re just at the beginning of where this is going, and as you correctly point out, nobody knows at this point. But I think within 6 months we will know.
One of the reasons I think that is that Dr Mikovits had a meeting soon after her Science paper was published, and she had it at the Cleveland Clinic with Dr Silverman, and invited retrovirologists to come and discuss some of the methods of the paper and 76 retrovirologists showd up. They were impressed. They thought “Hey, this is interesting.” So I don’t think this is just going to slide by and we’ll never get to the answers. And that’s happened in the past. I think that this… we will come to know the answers.
Q2: Could this be epidemiologic in some cases of Autism like an epidemic of Autism. I know it’s come out that they’ve tried to test kids with Autism and I think maybe one study I read was that 40% came up positive for XMRV or maybe a higher percent. What do you think about?
I don’t know the answer to that. I read the material on the WPI website that said says that they had 3 patients initially with autism who tested positive. Autism is a very interesting parallel because the immunology of autism is very similar to that of Chronic Fatigue Syndrome. Young kids we don’t see with Chronic Fatigue Syndrome the same way we see it in adolescents, so I can say retrospectively I see you can had it when you were three years old, but it could be that when you have a more serious infection, that clinically it could be expressed in a disease such as autism.
So I don’t know the answer to that, but it’s very possible. Dr Mikovits gave a talk last week I believe to the Defeat Autism Now group and I would imagine that was taped and it may be on the web. I haven’t seen it but it may be she addresses that question more specifically.
Q3: I’m an internist in Los Angeles for 15 years. I have not seen a single couple or at best maybe one couple with both Chronic Fatigue Syndrome. So how is it transmissable?
Bell: Aha. [laughter] I think that’s a wonderful question. Did everybody hear the question? He’s an internist who’s seen Chronic Fatigue for many years. We’ve got to get you up here… you give the next talk [laughter]… but he has not seen cases where both husband and wife have it.
I agree, it doesn’t happen. So the normal way of retroviral transmission is blood to blood transmission. Sexual transmission. This raises the question, well if this is an sexually transmitted illness then how come we’re not seeing it that way? That can’t be the major way it’s transmitted.
In my interest, I’m a paediatrician by training, and the initial outbreak that we had, was 212 patients. Of them 60 were children. This is exactly the same incidence that you see in community-wide outbreaks of what may be Chronic Fatigue Syndrome that happened in the past. Icelandic epidemic, 1200 people got sick. Royal Free illness…
So whenever it happened in a community, you had about 60 kids and the rest were adults. Of the kids that I saw, they were pre-pubertal or just entering puberty. The town that I work in is a small town. If there’s some kid that’s messing around in a hayloft someplace, everybody in town knows about that. What I am saying is that of the kids in my practise who came down with Chronic Fatigue Syndrome, they did not get it by sexual transmission or by blood transfusion.
How did they get it? I have no idea. I really don’t know the answer. But the epidemiology does not look at all like this is a sexually transmitted illness. Occasionally I’ve seen a husband and wife both get sick with the same flu-like illness at the beginning, but I very rarely see husbnand and wife who one gets sick 3 years after the other. I don’t think I’ve ever seen that. I’m not saying it couldn’t happen, because it’s a common illness. But I agree this does not look like a sexually-transmitted illness.
Q4: I’ve tested 2 patients by VIP and one tested positive. I told him that I don’t think it’s sexually transmitted because he’s asked me about his partner and all of that, but he emailed me Dr Cheney’s email saying that it’s in the saliva, it’s in this and that, panic all over. So, is it in the saliva?
Bell: Don’t know. Is it in the saliva? I would imagine that it is. If you look at animal retroviral studies, it is transmitted by saliva in many animals. So for example feline leukaemia disease from grooming in cats. So could it be transmistted by saliva? I would think it theoretically possible but it doesn’t fit with the epidemiology. Again the epidemiology looks really like an infectious mono-like illness. Now the question is, is it a mono-like illness or is it, let’s say Epstein-Barr Virus, that triggers Chronic Fatigue Syndrome people who have no symptoms with underlying XMRV. These are just questions that are there and it willl be a while before they get answered.
Q5: You made me change my mind about which was the most important question [laughter]. Is it possible that XMRV or similar type of retrovirus could actually infect another viruses cell like an EBV cell?
Bell: EBV is a herpes virus and it’s a huge virus. OK, if XMRV were the size of this front row, herpes virus is the size of this room. Back in 1987 or so, George Miller showed that the herpes virus could carry retroviral fragments. Now, could it be that a herpes virus could carry as a piggyback? I don’t know retrovirology well enough to be able to answer that. So it’s one of the questions that I hope will be looked at, because you know for years we’ve been saying ‘this fits with the epidemiology of mono’ so maybe, but again I just don’t know the science well enough to be able to answer that question.
It’s very nice to meet you. I think possibly one of your greatest discoveries was that people with CFS have low blood volume. So my doctor [inaudible, laughter] and he sent me to Pasadena, it turned out that I have low blood volume.
Bell: Do you remember how much?
Q6: My doctor told me that I have about 130 less blood than a normal person.
Bell: OK so your doctor told you that you have 67% of a normal circulating blood volume. That’s about the number that I’ve seen a lot. Do you know what happens if you are a healthy person and you lose one third of your blood volume? You croak. You’re in shock, but they can croak. [laughter] A normal person can’t lose all that volume all at once and stay alive, actually. So the number is correct; what they measured. I assume they did it with the chromium 51.
Q6: Right, in the radiation. They told me that the test was developed for people who have too much blood.
Bell: That’s right.
Q6: And then they actually have to bleed people.
Bell: That’s right.
Q6: I’m not really… I am so sick all the time that… so it’s a long time… even if I can check my mail, I’m doing good in a day. You know, my mailbox is just in front of my house. That’s how tired I am every day, it’s like I’m anaemic. And even though I have low blood volume as we’ve established, my CDCs always come out perfect, so how could that be?
Bell: Good question, and its… I’ll tell you that story before we get to the answer to that question.
We have a local ER, and my wife runs the ER, and she knows the doctor I’m talking about. He’s a wonderful guy. He knows that this Chronic Fatigue nonsense is just taking up his time. He needs real disease, like somebody with their arm cut off, that’s what he likes. Patients with Chronic Fatigue Syndrome come into the ER he just rolls his eyes and he says “OMG get that person out of here”. But he’s very smart, he’s a very bright guy.
So I went into the ER one morning and I went up to him and I said “Hey Sam look at this. I got a patient here, and this is the blood volume study that we did. This patient has only two thirds of normal circulating blood volume. He looked at it and said “Holy Smokes!” he was really impressed. I said “You kicked her out of the ER last night.” And he did. I mean, that’s why I went in to talk to him. Our friendship didn’t go so well after that. [laughter]
OK so, what happens is, there’s a decrease in the circulating blood volume. For about five years after that finding, and that’s been confirmed now by an NIH study done in Miami and in a couple of other places. So I think that this is for real. 80% of patients will have a low circulating blood voluime. And it’s significantly low like what you’re talking about. If somebody comes in with a 10% reduction in blood volume which is what happens to astronauts; they have a hard time. There was a press conference recently, this astronaut fainted at the press conference because she had lost the… she had 10% reduction.
So what happens is, if you look at all of the mechanisms to maintain circulatory blood volume; anti-diuretic hormone; er, there are 3 or 4 regular mechanisms. They all work fine. So how can it be that you have only 67% blood volume and your ADH is ok and so on?
It turns out that the answer must be systemic vaso-constriction, so that your pipes are constricted. So that when you measure all of the blood in your body, your body thinks that two thirds is ok. But this is not gonna circulate blood up into your brain well at all.
My personal feeling, and this is a bias that I have, is that many of the symptoms of this illness are vascular. So that if you were able to normalise blood flow through the brain, many of the symptoms would be much better. That pre-syncopal fatige, and so on. Unfortunately, I don’t know how to do that. We’ve been messing around with intravenal saline and for some people that would give them a significant lift, but it’s not a good long-term treatment.
I think the vascular aspects of it are due to systemic vaso-constriction, and the best candidate I can come up with are the iso-prostanes. Iso-prostanes are intense vaso-constrictors which are put out when the body is having severe oxidative stress, so that when your cells are under oxidative stress, the iso-prostanes come out, vaso-constriction, less oxygen actually gets to the cells to cause more oxidative stress, but I don’t know any simple way to correct that.
Q6: Don’t you think that could be the cause of Chronic Fatigue? If people are walking around with 30% less blood that would cause the fatigue? Making them severely fatigued?
Bell: It does, but it’s also possible to correct that. Give them a blood transfusion. Bring it up to 100%.
Q6: Yeah that’s what I’m saying, if they’re bleeding people why don’t they give me some of their blood! [laughter] I’ll take that chance…
Bell: Because it doesn’t work.
Q6: It doesn’t work?
Bell: Temporarily it makes you feel a little bit better for a week or two weeks.
Q: I’d take a week or two weeks! [laughter]
Bell: This is why I wouldn’t give it to anybody because they would want it on a regular basis. Now I have a book that’s on my website, it’s free, and one of the chapters in there is about a patient who had her blood volume tested. It was about 60% of normal. She went into the ER throwing up blood. She had been taking too much ibuprofen. And then they gave her a couple of bags of normal saline. It diluted her blood out enough so that her hermatocrite[?] was low. They gave her a blood transfusion and she felt wonderful for a couple of weeks. She was able through her haemotologist to get blood transfusions after that. She felt much better with the blood transfusions. This is not an acceptable treatment in my mind, because…
Q6: But if it makes someone feel better, when they felt like they were going to die, and they’re feeling like they’re dying every day, then they’re going to have 2 good weeks don’t you think it’s worth it? I do.
Bell: You know, there are times, and I’ve thought about this. There are two papers in the medical literature that argue exactly what you’re arguing. If somebody has ideopathic hypovolaemia, which is what you have, and that’s an old term, why not give them blood transfusions? This was argued in the medical literature. However, in today’s day and age, you won’t find any physician who will do that. Maybe a haemotologist will. So, sorry, even though that may make you feel better, and it might be worth it, you’re not going to get it from any physician who’s licensed. Black market blood transfusions… well, I don’t think that’s [some laughter]
Q: So you don’t see any treatments for low blood volume?
Bell: You can make the blood volume come back to normal in other ways. Saline is one, anti-diuretic hormone, and… there… but it doesn’t work very well. I’m sorry for putting you in a problem but it doesn’t work. We treated about 25 patients with ADH, and we were able to get their blood volume up, but they didn’t feel enough better. Also 20% of the more severe chronic fatigue had normal blood volume. So while I think it’s important in the symptoms for a lot of people, it’s not the answer.
Q6: The most severe of the Chronic Fatigue have normal bloood volume?
Bell: Yes. Now our 19th question, anybody else before…?
Q7: I have a bunch of questions, but I’ll just pick on. What would the implications be for having children if this does get into the DNA? Have you seen instances of this within your pracitice? How does this work with HIV?
Bell: Very good question, and again we don’t know the answer.
Clinically Chronic Fatigue Syndrome does run in families. 20 years ago the National Institute of Health said there was no family link or genetic link, and that’s not true. They now have admitted that are genetic links. It does run in families.
One possiblity is that it’s a disease of the mitochondria, and that’s a mother to son transmission, but we don’t really know about that. Clinicians will say there’s no question that it runs in families. When it does occurr in families, children usually get sick at around the time of puberty. Of the many mothers who have had kids in my practice, the kids look just fine. The exam is normal, and they seem to act normal.
Now could the kids have more infections than if they didn’t come from a family where Chronic Fatigue Syndrome was present, it’s possible. But here’s where there’s a lot of bias. Because Mum is so sick with Chronic Fatigue Syndrome she’s particularly worreid and so with every cold she brings the kid in, but it doesn’t stand out in my mind that there’s an increased risk.
If XMRV turns out to be the cause, then I think that the first recommendation would be don’t breast feed the babies, because you can pass it in breast milk. On the other hand, we just don’t know, and it’ll probably be a good year before we really know anything about that. At this point being cautious, I would say if I was about to have a baby and I had CFS I would probably say bottle feed that baby, but the American Institue of Paediatrics is going to come after me for having said that, because that goes against what they’re trying to teach and in general I support what they say there but I think that it would be a reasonable precaution and it’s not all that bad to bottle feed babies.
Q7: Is that what they do with HIV? So that’s really the concern, then, is breast milk?
Bell: Yes. Now you can be, you can pass HIV at the time of delivery or you can pass it prior to delivery, through the placenta, or you can pass during the time of delivery particularly if babies swallow some of the blood, so C-Section tends to reduce the incidence. This is not longer as much of a concern, because with the anti-retroviral drugs you can reduce the viral load so much that the incidence of peri-natal HIV infection has gone way down.
Q1: I guess I could ask one more question. I was wondering… early immune insult, instead of XMRV being the culprit, an early immune insult that damages the immune system; you know, so, disordered immune cells like autism, like a lot of people think with autism, then you can [inaudible] immune system weak to allow viral infections… [inaudible] like HIV, HPV to be so widespread in the population but have no symptomatic expression?
Bell: I didn’t understand the question.
Q8: What he’s saying is, that there could be previous immune insults that would lead to system deficiency, that would lead to the virus?
Bell: I could accept that but I don’t know what people say or what they mean when they say “Well, I have an immune problem”.
Q1: I can answer, that when you see the other symptoms. For example the immune system develops between 1 and 7, and it’s you know and that’s why breast-feeding is so important because the mother passes on the cells… so and then at the same time the immune system is self and non-self recognition, so is this safe, is this not safe, is this me is this not me, and you see a real extreme expression of that in auto-immune diseases, so that… if it were something like that what you would think is real dramatic results such as autism makes sense with that, so real global effects… uh… though you know it’s possible that different forms of it would express itself, so that a certain quantity of damage, that could result in a breakpoint early, and then another volley of damange would result in a break later on that could be brought on by other environmental hits, I don’t know if anybody’s done that … and another way, I guess another thought is, has anybody ever injected XMRV into animals to see what it would do itself if we put it in directly?
Bell: We don’t know, obviously. Now it is a xenotropic virus, so that it’s probably in other mammals. This is just the beginning of looking at XMRV. Now for years it was looked at in mice because that’s where its first home was where it was found. So they use that as the research model. But I don’t think that they’ve really looked for it in other mammals. So that of course is a concern. There has been some information on the web that sick pets has been something that has been an issue. We’re just at the beginning of that and we don’t know the answer.
But that doesn’t answer your question about the immune hit. You know there are so many different things that are meant [?] allergies result from an immune hit; auto-immune disease. Usually it makes sense to me only if I can see the area of the immune hit.
For example, the B cells, well then you have inability to make anti-bodies, and it would cause this whole type of disease totally different from Chronic Fatigue. If it’s the CD4 cells well that would cause this sort of disease, so that in Chronic Fatigue Syndrome the area of immune system problems is primarily the NK cell and cytokine disregulation, but the NK cell seems to be the one that stands out. To me that looks fairly specific.
Q1: …NK is not, itself, innate, so it’s not like [inaudible] therefore in the early immune [inaudible] that’s, you would expect less damage from some sort of environmental hit.
Bell: Oh no, you would … there are genetic diseases where poeple are born without NK cells. They do very poorly.
Q9: Going back to the possibility of sexual transmission and the gender differences of disease expression, more women are diagnosed with Chronic Fatigue than men, could it be possible that they are passing it back and forth, and that the women are getting Chronic Fatigue and the men are getting prostate cancer?
Bell: I would doubt it. Did everybody hear the question?
In general if you have an illness, you don’t pass it back and forth that way. This is a common misperception. A lot of my paediatric patients come in and family will say “Well, he had a cold, and he had a cold 2 months ago and then 2 months before that, so it’s just been passed back and forth.” That’s not true. It’s a different virus each time.
Once you develop an immunity to a certain viral infection whether it’s XMRV or any other, then you shouldn’t get it back again. In fact that holds up clinically. If you have a patient who has Chronic Fatigue Syndrome and recovers 100%, meaning that they can go out and exercise, they can go out to an all-night drinking party and not get a payback the next day, and they stay at 100% for at least 2 months, they won’t get it again. I’ve only seen one person who’s gotten it again over 25 years.
If on the other hand if you have somebody who gets Chronic Fatigue Syndrome and almost gets better, they’re back to 90% but they still can’t exercise the way they used to, they still can’t push themselves or else they’ll have a couple of days where they feel lousy, they will have fall down as time goes by. When somebody recovers they will not get it back again. Whether or not there’s any relationship with prostate cancer, I kinda doubt it. Because over the years I’ve always been watching for some type of associations and that’s just never shown up in any of my observations.
Let’s take 2 more questions and then we’ll quit.
Q10: When you say a low blood volume, does that mean a low hermatochrite [?] ?
Bell: No. The blood volume is the amount of blood that’s in your body. If you take a normal human being and you cut their jugulars and pour all their blood into a bucket, you get 5 quarts of blood, ok, that’s their circulating blood volume. Of the amount of blood that’s in the bucket, 40% is red blood cells and 60% is plasma. That’s the hermatochrite [?], ok? So with his blood volume being at two thirds, if you pour all his blood into a bucket — he wouldn’t do well [laughter] — but instead of 5 quarts you’d have 3.5 quarts. But the hermatochrite of that blood is normal. So that’s why you’d never see this on a hermatochrite or a heamoglobin test.
Q11: So how is it tested?
Bell: Oh the blood volume test was developed by a very interesting guy in Salem, Massachusetts. Oh, the history of this is just wonderful. I called him up right after we did this and he said well, you know, he’s very nice and he said “Well doctor I’m afraid you’re off your rocker”.
He invented that test in 1960 to look for too much blood in hypertension. That’s what the blood test was for. What you do is you take out a tube of blood, you label the red blood cells with Chromium 51, and then you inject that blood back in, OK, so it’s your blood going back in but now the cells are labelled with Chromium 51. You let the blood circulate around for a couple of hours. Then you take a tube of blood and you measure the Chromium 51 and based upon a person’s weight, you can calculate very accurately the amount of blood that’s in the person’s body. It’s so accurate in fact that you can tell who lives at the bottom of the mountain and who lives at the top of the mountain. Because, if you live on top of a mountain you have more blood than people living at the bottom. Most places don’t do the test any more because it’s an old test, and who needs it for hypertension? But it’s still a standard test.
One more question.
Q12: There was a discovery mentioned at a recent CFS conference about CFS patients having a [inaudible] immunodeficiency? How does that relate to XMRV?
Bell: I don’t know. The [inaudible] deficiency was something that I’d never pursued in my own studies with great vigour. I find that in order for me to learn I need to really dwell on something and I just chose not to dwell on that and so I don’t know the answer to that.
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