Sing
Senior Member
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- 1,784
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- New England
infoCFSclinic.com ?
I tried to find this address and it apparently doesn't exist, or not yet. Any information?
Thanks!
Cecelia
I tried to find this address and it apparently doesn't exist, or not yet. Any information?
Thanks!
Cecelia
Lily
*Believe*
- Messages
- 677
Uh-OH.....
that was supposed to be info@cfsclinic.com
Sorry, I'll need to fix that and ask Cort to correct it on the site. Thanks Cecelia for catching that!
that was supposed to be info@cfsclinic.com
Sorry, I'll need to fix that and ask Cort to correct it on the site. Thanks Cecelia for catching that!
Oh my! 
Cort
Phoenix Rising Founder
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- 7,392
Was Five ever done?
Lily
*Believe*
- Messages
- 677
Five is done
it's one page back on page 12 - done by Garcia
it's one page back on page 12 - done by Garcia
Yes, and thank you, Garcia.
Section 5 Antibodies, What we dont know, Cancer
Antibodies
Transcribed by Garcia, 12/16/09, Post #120
http://forums.aboutmecfs.org/showthread.php?t=1714&highlight=klimas+transcribe&page=12
[Question from audience, inaudible]
Oh thats a really good question. She asked: if theres antibodies why dont the antibodies kill it? Thats a very good question and one that dogs the vaccine-development people in HIV all these years.
The reason we dont have an HIV vaccine yet is that antibodies dont kill HIV. You need cytotoxic T-cells to kill HIV.
So all those vaccines for HIV have been trying to get the cytotoxic T-cell lines all geared up and ready to go and not focus on the antibodies. The antibodies dont do it.
Whereas for other viruses the antibodies are great for it. I mean all those childhood vaccines you got were just trying to build antibodies for all those years.
So there are some viruses that just the human body doesnt make a killing, lethal antibody to attach to that virus.
So we dont know this virus well enough. I dont know, there might be an antibody that kills this virus. Its only been a few years. They havent had a chance to look very hard.
The other thing disturbing on that other one was only half the people they looked at had antibodies, but they had the virus. So antibodies are probably not going to be our worlds best blood-test for this.
Slide: XMRV Associated Neuroimmune Diseases (XAND)
Potential Candidates:
Atypical MS: 3/3 positive for XMRV ENV protein and gag DNA
Fibromyalgia: 12/20 (60%) positive for XMRV gag DNA
Autism: 6/15 (40%) positive for XMRV gag DNA
4/7 (57%) positive for serum antibody to XMRV Env
Gulf War Illness: Not tested
Samples were taken from family members of XMRV positive CFS subjects with these neuroimmune diseases.
Judy Mikovits renamed the illness, Im not sure this is going to stick, but she called it XAND. XMRV Associated Neuroimmune Diseases.
The reason why I dont think its going to stick is I dont think the M is going to stick very long. I think as soon as this virus is clearly shown to be a human virus, they are not going to call it a mouse virus any more, and theyre going to rename this virus, and then well be renaming again. So Im not leaping to embrace the new name, but I will embrace any name thats not Chronic Fatigue Syndrome. [Applause]
This is also stuff they showed just last week, and this is not published data. And these are not going to be very representative because these are family members of CFS patients, who happen to have MS, fibromyalgia, autism. And in family members of CFS patients who had these other conditions they found XMRV in that family member. So there are lots of questions.
This is the first paper. The paper is very exciting. The next step is to validate the paper. The very next step. And this is going to be difficult because what did I say about the prostate work? Two of them said yes, and two of them said no. Now if you talk to the guys who said yes, theyll say the guys that said no didnt use the same method to look. Thats science. We do this all the time. We get into big cabals over method. Method, method, method.
Already I have a conference call with the CDC on Monday because they want their samples. The guy at NYU wants their samples. The guy at Hopkins wants their samples. I mean everybody knows that I have a freezer full of samples and my reaction is: Oh my God, what method would you apply?
I dont want to be the one that had the bad method. I dont want my name on the paper that didnt use the right tool. So, the first step I think is to get all the people trying to do this together and use the same method. And thats absolutely necessary.
And if you see some negative papers coming out, dont be discouraged. Its going to happen. There are going to be some negative papers. People really jump to do this. And the method is not that easy and getting the right bits and pieces you need together. Its not: read the paper and then go do it.
Things we dont know.
What cell types are infected? We know for sure that NK-cells are and other white blood cells are. We know that there is some neurotropism [affinity for nervous tissue] from this virus from the mouse studies. But we dont know every kind of cell type that could be infected and whats infected in humans.
How is it transmitted? A critical question. Certainly the blood bank industry has jumped right in and are going to see if this is a worry there because they have freezers full of samples they can go back and survey for any positive and then actually have recipients, and they can see if there are any recipients that are positive. So theyll be able to test that theory I think very quickly and very efficiently.
What is the immune response that controls this virus? You asked that question: would antibodies do it? And the answer is, the antibodies might do it. Cells might do it. It might be that we have to repair these cells and then they can do it.
But those are good questions. We dont know for this virus what the answer is. But we do have a much better sense of what retroviruses are after the last 20 years of HIV work. We really do.
I mean I go to the HIV meetings and I go to the CFS meetings. Let me tell you the difference.
Reno [IACFS], and this is a pretty big meeting last year, I think they had 100 and maybe 200 investigators, and that was the whole world, the Japanese were there, the Europeans were there and pretty much its a whos who of who does this work and there was 200 of us.
And the HIV meetings, Ive been to meetings where 18,000 people came [gasps from audience]. And thats the kind of brain power that was being directed.
Now the other thing about the HIV guys is that they are kind of bored, dont have anything to do, patients are doing well, [laughter] science is a little dry, not a lot of grants. Cool! Were going to suck some of those guys right into our field now. This is going to be really, really good. Weve been waiting for a flush of brilliant new people, and I think we are going to see a flush of brilliant new people come into our field if this holds up, theres going to be a lot of good interest.
Cancer
Does this virus alter the risk for cancer? Now its a question that has been left unanswered to you and every single one of my patients has asked me this question: Do I have an increased risk of cancer?
My gut reaction is yes probably, because the cells that are your cancer-prevention cells are part of whats broken or partially broken in this illness.
So you always hear me talking about anything you can do, antioxidants, to try to help you any way you can to boost up your own tumor-defense systems. And these cells in particular.
But here we are 25 years into this illness and we do not to date have a natural history study that is longer than 3 years. No one has yet answered for you the question that needs to be answered.
Part of my motivation to put together these clinics with Hannah, these Chronic Fatigue clinics, is that we were going to use this big common database and if we really can get a bunch of clinics all linked up together using the same database were going to have a natural history study finally. Because you have to do it yourself. Thats how it works in this field. We actually dont have that information for you.
Can we develop Immune-based therapies? I and Mikovits have been working on immune-based therapies for years. We did a really cool one years ago with cell extension. Some of you were in that study and some of you got really big impressive results when we enhanced your cytotoxic T-cells and your natural killer cells. You got good clinical improvement.
Section 5 Antibodies, What we dont know, Cancer
Antibodies
Transcribed by Garcia, 12/16/09, Post #120
http://forums.aboutmecfs.org/showthread.php?t=1714&highlight=klimas+transcribe&page=12
[Question from audience, inaudible]
Oh thats a really good question. She asked: if theres antibodies why dont the antibodies kill it? Thats a very good question and one that dogs the vaccine-development people in HIV all these years.
The reason we dont have an HIV vaccine yet is that antibodies dont kill HIV. You need cytotoxic T-cells to kill HIV.
So all those vaccines for HIV have been trying to get the cytotoxic T-cell lines all geared up and ready to go and not focus on the antibodies. The antibodies dont do it.
Whereas for other viruses the antibodies are great for it. I mean all those childhood vaccines you got were just trying to build antibodies for all those years.
So there are some viruses that just the human body doesnt make a killing, lethal antibody to attach to that virus.
So we dont know this virus well enough. I dont know, there might be an antibody that kills this virus. Its only been a few years. They havent had a chance to look very hard.
The other thing disturbing on that other one was only half the people they looked at had antibodies, but they had the virus. So antibodies are probably not going to be our worlds best blood-test for this.
Slide: XMRV Associated Neuroimmune Diseases (XAND)
Potential Candidates:
Atypical MS: 3/3 positive for XMRV ENV protein and gag DNA
Fibromyalgia: 12/20 (60%) positive for XMRV gag DNA
Autism: 6/15 (40%) positive for XMRV gag DNA
4/7 (57%) positive for serum antibody to XMRV Env
Gulf War Illness: Not tested
Samples were taken from family members of XMRV positive CFS subjects with these neuroimmune diseases.
Judy Mikovits renamed the illness, Im not sure this is going to stick, but she called it XAND. XMRV Associated Neuroimmune Diseases.
The reason why I dont think its going to stick is I dont think the M is going to stick very long. I think as soon as this virus is clearly shown to be a human virus, they are not going to call it a mouse virus any more, and theyre going to rename this virus, and then well be renaming again. So Im not leaping to embrace the new name, but I will embrace any name thats not Chronic Fatigue Syndrome. [Applause]
This is also stuff they showed just last week, and this is not published data. And these are not going to be very representative because these are family members of CFS patients, who happen to have MS, fibromyalgia, autism. And in family members of CFS patients who had these other conditions they found XMRV in that family member. So there are lots of questions.
This is the first paper. The paper is very exciting. The next step is to validate the paper. The very next step. And this is going to be difficult because what did I say about the prostate work? Two of them said yes, and two of them said no. Now if you talk to the guys who said yes, theyll say the guys that said no didnt use the same method to look. Thats science. We do this all the time. We get into big cabals over method. Method, method, method.
Already I have a conference call with the CDC on Monday because they want their samples. The guy at NYU wants their samples. The guy at Hopkins wants their samples. I mean everybody knows that I have a freezer full of samples and my reaction is: Oh my God, what method would you apply?
I dont want to be the one that had the bad method. I dont want my name on the paper that didnt use the right tool. So, the first step I think is to get all the people trying to do this together and use the same method. And thats absolutely necessary.
And if you see some negative papers coming out, dont be discouraged. Its going to happen. There are going to be some negative papers. People really jump to do this. And the method is not that easy and getting the right bits and pieces you need together. Its not: read the paper and then go do it.
Things we dont know.
What cell types are infected? We know for sure that NK-cells are and other white blood cells are. We know that there is some neurotropism [affinity for nervous tissue] from this virus from the mouse studies. But we dont know every kind of cell type that could be infected and whats infected in humans.
How is it transmitted? A critical question. Certainly the blood bank industry has jumped right in and are going to see if this is a worry there because they have freezers full of samples they can go back and survey for any positive and then actually have recipients, and they can see if there are any recipients that are positive. So theyll be able to test that theory I think very quickly and very efficiently.
What is the immune response that controls this virus? You asked that question: would antibodies do it? And the answer is, the antibodies might do it. Cells might do it. It might be that we have to repair these cells and then they can do it.
But those are good questions. We dont know for this virus what the answer is. But we do have a much better sense of what retroviruses are after the last 20 years of HIV work. We really do.
I mean I go to the HIV meetings and I go to the CFS meetings. Let me tell you the difference.
Reno [IACFS], and this is a pretty big meeting last year, I think they had 100 and maybe 200 investigators, and that was the whole world, the Japanese were there, the Europeans were there and pretty much its a whos who of who does this work and there was 200 of us.
And the HIV meetings, Ive been to meetings where 18,000 people came [gasps from audience]. And thats the kind of brain power that was being directed.
Now the other thing about the HIV guys is that they are kind of bored, dont have anything to do, patients are doing well, [laughter] science is a little dry, not a lot of grants. Cool! Were going to suck some of those guys right into our field now. This is going to be really, really good. Weve been waiting for a flush of brilliant new people, and I think we are going to see a flush of brilliant new people come into our field if this holds up, theres going to be a lot of good interest.
Cancer
Does this virus alter the risk for cancer? Now its a question that has been left unanswered to you and every single one of my patients has asked me this question: Do I have an increased risk of cancer?
My gut reaction is yes probably, because the cells that are your cancer-prevention cells are part of whats broken or partially broken in this illness.
So you always hear me talking about anything you can do, antioxidants, to try to help you any way you can to boost up your own tumor-defense systems. And these cells in particular.
But here we are 25 years into this illness and we do not to date have a natural history study that is longer than 3 years. No one has yet answered for you the question that needs to be answered.
Part of my motivation to put together these clinics with Hannah, these Chronic Fatigue clinics, is that we were going to use this big common database and if we really can get a bunch of clinics all linked up together using the same database were going to have a natural history study finally. Because you have to do it yourself. Thats how it works in this field. We actually dont have that information for you.
Can we develop Immune-based therapies? I and Mikovits have been working on immune-based therapies for years. We did a really cool one years ago with cell extension. Some of you were in that study and some of you got really big impressive results when we enhanced your cytotoxic T-cells and your natural killer cells. You got good clinical improvement.