WPI Finds High Levels of Retrovirus in ME/CFS Patients
- Thread starter Cort
- Start date
Hi Jen--
That belief about it "being hardddddd" is one that I confronted in my inner work and therapy a lot. I can hear the questions that I would be asked: "So is this REALLY TRUE? and WHO is making it hard?" and "If you give up that belief, how would you feel?"
Too much information and knowing are two different things. The mind is REALLY good at the former and completely stupid at the latter. That's my experience. It's coming in real handy at a time like this.
That belief about it "being hardddddd" is one that I confronted in my inner work and therapy a lot. I can hear the questions that I would be asked: "So is this REALLY TRUE? and WHO is making it hard?" and "If you give up that belief, how would you feel?"
Too much information and knowing are two different things. The mind is REALLY good at the former and completely stupid at the latter. That's my experience. It's coming in real handy at a time like this.
I too had those same negative connotations re the HIV virus, plus also am worried that what will happen to the (perhaps) thousands of folks who end up not having the virus, but still have been to dozens of doctors and had dozens of tests over years, maybe decades, and are just as disabled as XAND positive patients?
Will they be mocked off of boards, discredited as not having "REAL" CFS/ME? I know it's already happening on some lists, and that makes me ill in and of itself...
I too thought about the bioweapons angle...it's sooo easy to go there...but then what about the earlier outbreaks in the UK in the 30's and the US in the 1950's? Will they be able to go back and find the same exact retrovirus in tissue biopsies? If not, what else was responsible for those cases...and weren't they indeed 'real' CFS/ME?
And re homeopathy -- that's what I was thinking too, and posted it on Joey's thread -- perhaps a homeopathic nosode will become available, or if not, perhaps homeopaths will still treat according to classical homeopathy, retrovirus or no retrovirus...
Here I go again, asking too many questions and not taking my own advice! Definitely hard to follow!
I think it says a lot that some of us feel a lot better when we take our minds off of this...so BYE FOR TWO DAYS! (let's see if that will work.)
Will they be mocked off of boards, discredited as not having "REAL" CFS/ME? I know it's already happening on some lists, and that makes me ill in and of itself...
I too thought about the bioweapons angle...it's sooo easy to go there...but then what about the earlier outbreaks in the UK in the 30's and the US in the 1950's? Will they be able to go back and find the same exact retrovirus in tissue biopsies? If not, what else was responsible for those cases...and weren't they indeed 'real' CFS/ME?
And re homeopathy -- that's what I was thinking too, and posted it on Joey's thread -- perhaps a homeopathic nosode will become available, or if not, perhaps homeopaths will still treat according to classical homeopathy, retrovirus or no retrovirus...
Here I go again, asking too many questions and not taking my own advice! Definitely hard to follow!
I think it says a lot that some of us feel a lot better when we take our minds off of this...so BYE FOR TWO DAYS! (let's see if that will work.)
A
That is Fine...
Multiple replies in one thread are perfectly fine.
It is the creation of two separate threads for the same topic--known in internet jargon as "cross posting" that is frowned upon. Doing this serves only to fragment discussion.
More importantly, it breaks down organization--something that will make it very difficult for those who visit the site in the future looking for old information.
Again, the goal here is uncensored discussion. We have not deleted any posts, nor do we anticipate doing so. The only exceptions will be those consisting of advertising (spam) or solely of ad hominem (against the person) attacks.
Still, threads may be moved to proper categories and multiple threads merged to keep discussions flowing smoothly and everything organized for future users.
Thanks to the hard work of a lot of great posters, we are in the process of amassing the greatest patient resource for this illness in existence. Keeping things well organized will ensure that those who view these threads years from now will have easy access to logical flow of information.
Multiple replies in one thread are perfectly fine.
It is the creation of two separate threads for the same topic--known in internet jargon as "cross posting" that is frowned upon. Doing this serves only to fragment discussion.
More importantly, it breaks down organization--something that will make it very difficult for those who visit the site in the future looking for old information.
Again, the goal here is uncensored discussion. We have not deleted any posts, nor do we anticipate doing so. The only exceptions will be those consisting of advertising (spam) or solely of ad hominem (against the person) attacks.
Still, threads may be moved to proper categories and multiple threads merged to keep discussions flowing smoothly and everything organized for future users.
Thanks to the hard work of a lot of great posters, we are in the process of amassing the greatest patient resource for this illness in existence. Keeping things well organized will ensure that those who view these threads years from now will have easy access to logical flow of information.
Hi Islandfinn,
I had a feeling someone was going to ask me that. I do not think I read it, but with reading over 300 articles, I could have. I have a friend, who has direct sources within this research team, who has told me a lot of confidential things, as well.
I am not even going to swear by that particular statement since I cannot locate a link or anything except my poor memory to back it up. I have a source pretty high up the food chain that it could have come from, but at least I can back this up:
"Mikovits says that, like HIV, the virus probably attacks some elements of the immune system, and is passed on through bodily fluids.
But unlike the AIDS virus, which will eventually attack anyone who contracts it, XMRV likely damages only those people with a genetic or physiological susceptibility.
"You can be infected and be well," she says, adding millions of people likely carry the virus with no ill effects.
http://www.healthzone.ca/health/newsfeatures/article/707715--chronic-fatigue-a-true-human-infection-study-says
I had a feeling someone was going to ask me that. I do not think I read it, but with reading over 300 articles, I could have. I have a friend, who has direct sources within this research team, who has told me a lot of confidential things, as well.
I am not even going to swear by that particular statement since I cannot locate a link or anything except my poor memory to back it up. I have a source pretty high up the food chain that it could have come from, but at least I can back this up:
"Mikovits says that, like HIV, the virus probably attacks some elements of the immune system, and is passed on through bodily fluids.
But unlike the AIDS virus, which will eventually attack anyone who contracts it, XMRV likely damages only those people with a genetic or physiological susceptibility.
"You can be infected and be well," she says, adding millions of people likely carry the virus with no ill effects.
http://www.healthzone.ca/health/newsfeatures/article/707715--chronic-fatigue-a-true-human-infection-study-says
natural anti-retroviral links
Some links to natural anti-retroviral therapies, for those like me who are sensitive to drugs.
Here is some info on Olive Leaf Extract for viral control.
http://www.diagnose-me.com/treat/T166132.html
Olive leaf has really helped me, apparently it is known to counteract retroviral infection.
Here is another link, Jonathan Campbell has a protocol that he uses for AIDS and CFS, and it is targeted at retroviral/viral control, as well as opportunistic infections. He sells his other protocols but this one is free on his website.
http://www.cqs.com/immunedisorders.pdf
I tried a subset of his recommends a few years ago and it helped a little, maybe should have tried the whole protocol...
Some links to natural anti-retroviral therapies, for those like me who are sensitive to drugs.
Here is some info on Olive Leaf Extract for viral control.
http://www.diagnose-me.com/treat/T166132.html
Olive leaf has really helped me, apparently it is known to counteract retroviral infection.
Here is another link, Jonathan Campbell has a protocol that he uses for AIDS and CFS, and it is targeted at retroviral/viral control, as well as opportunistic infections. He sells his other protocols but this one is free on his website.
http://www.cqs.com/immunedisorders.pdf
I tried a subset of his recommends a few years ago and it helped a little, maybe should have tried the whole protocol...
Summer
I'd be interested in hearing. Though perhaps we can start a different thread "Where might modern epidemics originate, and who is vulnerable"? Or something on that order.
I'd be interested in hearing. Though perhaps we can start a different thread "Where might modern epidemics originate, and who is vulnerable"? Or something on that order.
I guess it is safe to admit I agree with you 100%. And let's not forget about Feline Leukemia, which is a retroviral illness that cropped up suddenly in cats all over the world 25 years ago.
Just things that have made me go hmm.
I have dug deep into all this for years, but I have kept it mostly to myself.
Just things that have made me go hmm.
I have dug deep into all this for years, but I have kept it mostly to myself.
I guess it is safe to admit I agree with you 100%. And let's not forget about Feline Leukemia, which is a retroviral illness that cropped up suddenly in cats all over the world 25 years ago.
Just things that have made me go hmm.
I have dug deep into all this for years, but I have kept it mostly to myself.
Just things that have made me go hmm.
I have dug deep into all this for years, but I have kept it mostly to myself.
And of course, waiting to be answered, is whether XMRV is a genuinely new virus, or whether it has been with us for generations.
Far too many questions for a person like me, always impatient for answers.
Having had cats (wild and tamed), all outdoor, for 35 years (until 1985), I never saw anything like Feline Leukemia in a cat, and I lived in the country and between all my family and neighbors we had scads of cats
This gets into the conspiracy side of things, which I don't think this site is about, but I did want jenbooks to know she was not alone in her thinking about some of the things she said. You can find these theories quickly via google search, i.e. google "conspiracy feline leukemia", etc.
Now back on topic.
This gets into the conspiracy side of things, which I don't think this site is about, but I did want jenbooks to know she was not alone in her thinking about some of the things she said. You can find these theories quickly via google search, i.e. google "conspiracy feline leukemia", etc.
Now back on topic.
Thanks Summer. I've had cats all my life ... but only two at a time maximum ... and have actually NEVER seen a case of FL, even today, so it's interesting to hear from someone who has seen it.
I'm not really into conspiracy theories. It's hard enough to keep up with facts.
I'm not really into conspiracy theories. It's hard enough to keep up with facts.
Many Thanks!!
Thanks to Cort and CFIDS Assoc. for emails giving me a heads up to this encouraging finding. And to Roan for all the website info. I printed and read every one of them...each gave info not given in the others.
Question: Did anyone see this on ANY TV news program??? I didn't...but I only watch one channel...and it wasn't there! How many need to know that didn't get the heads up?? We need to get out the word! I emailed FOX News, since it's the most-watched news. We'll see if it did any good.
I'm with the one who pointed out that a simple test expected in 6 months is the best news. It's a beginning point where there hasn't been one!
And thanks to those of you who have suffered thru treatments...going ahead of the rest of us who haven't been encouraged to do so...and/or who are chicken, like Roan and me
Cort...cannot thank you enough for this forum and your website!! I don't know how you have the energy and brain function to do it...but sure am grateful you do! Praying for you, Friend!
Thanks to Cort and CFIDS Assoc. for emails giving me a heads up to this encouraging finding. And to Roan for all the website info. I printed and read every one of them...each gave info not given in the others.
Question: Did anyone see this on ANY TV news program??? I didn't...but I only watch one channel...and it wasn't there! How many need to know that didn't get the heads up?? We need to get out the word! I emailed FOX News, since it's the most-watched news. We'll see if it did any good.
I'm with the one who pointed out that a simple test expected in 6 months is the best news. It's a beginning point where there hasn't been one!
And thanks to those of you who have suffered thru treatments...going ahead of the rest of us who haven't been encouraged to do so...and/or who are chicken, like Roan and me
Cort...cannot thank you enough for this forum and your website!! I don't know how you have the energy and brain function to do it...but sure am grateful you do! Praying for you, Friend!
A
XMRV Specific Forum
The XMRV specific forum is now up.
This forum should really grow as we learn more about this virus, testing, treatment, etc.
I moved some of the threads with regard to XMRV testing and resources there, but left permanent redirects in this forum.
The XMRV specific forum is now up.
This forum should really grow as we learn more about this virus, testing, treatment, etc.
I moved some of the threads with regard to XMRV testing and resources there, but left permanent redirects in this forum.
K
Aftermath, could you or one of the other Admins put a link to this thread in the XMRV Retrovirus Resource List Sticky (Cort's post)? At the moment, this thread may be the most comprehensive resource for XMRV news available anywhere.
Thanks,
Kim
Thanks,
Kim
A
Absolutley.
I made Cort's XMRV Resource Thread as the top sticky in the XMRV forum. I will also link it back to this thread as you requested.
I made Cort's XMRV Resource Thread as the top sticky in the XMRV forum. I will also link it back to this thread as you requested.
antibodies in controls
http://cheneyclinic.com/page/1
From Cheney on his website:
Does anyone know where Cheney is getting the 4% figure? Is he simply rounding up the 3.7% from the study? Because the 3.7% refers only to active virus. I have yet to see Mikovits say how many controls have antibodies--has anyone else? I do worry if it's a high number it could diminish the impact of the XMRV link to CFS.
I've seen news outlets use the 95% (I think one source used 98%, but I don't think that's right.)
I really, really hope Mikovits can publish more data soon.
http://cheneyclinic.com/page/1
From Cheney on his website:
Does anyone know where Cheney is getting the 4% figure? Is he simply rounding up the 3.7% from the study? Because the 3.7% refers only to active virus. I have yet to see Mikovits say how many controls have antibodies--has anyone else? I do worry if it's a high number it could diminish the impact of the XMRV link to CFS.
I've seen news outlets use the 95% (I think one source used 98%, but I don't think that's right.)
I really, really hope Mikovits can publish more data soon.
"Mikovits believes the association may be even stronger than the present work indicates. DNA sequencing only picks up active infections, she says, so she wants to study CFS exposure to the virus more broadly. In an unpublished investigation, she and her colleagues analyzed blood cells in about 330 CFS patients and found that more than 95% expressed antibodies to XMRV, whereas about 4% of healthy controls did."
http://www.nature.com/news/2009/091008/full/news.2009.983.html
http://www.nature.com/news/2009/091008/full/news.2009.983.html
C
Hi. Do you think the 'test' we are waiting for will be for the live virus, or the antibodies to it?
Would it matter which one we get done?
E.g. (I'm guessing here)....
XMRV Antibodies = Infected Healthy People who are asymptomatic.
XMRV Live Virus = ME CFS People (severe)?
XMRV Live + Antibodies = ME CFS People (Less severe)?
Thanks for any ideas, great forum by the way, a god send.
Would it matter which one we get done?
E.g. (I'm guessing here)....
XMRV Antibodies = Infected Healthy People who are asymptomatic.
XMRV Live Virus = ME CFS People (severe)?
XMRV Live + Antibodies = ME CFS People (Less severe)?
Thanks for any ideas, great forum by the way, a god send.
OMFG!!! I can't believe I missed that, Summer! Thanks.
A
See The Testing Thread
It could be PCR (looking for segments of viral RNA) or an antibody test. Moreover, like with HHV-6A, it might be possible for XMRV to be absent from the blood while hiding in the central nervous system.
With this, you may have no active virus particles in the blood, yet the person may be very sick. This may be the case in the 2-5% currently testing negative for XMRV (just wild speculation on my part).
For this reason, one of my docs (Natelson) did PCR tests for HHV-6 of CSF (following a spinal tap).
Time will, tell, but at this point, I think that people should avoid jumping the gun.
I posted more on the XMRV Testing Thread
Hi. Do you think the 'test' we are waiting for will be for the live virus, or the antibodies to it?
Would it matter which one we get done?
E.g. (I'm guessing here)....
XMRV Antibodies = Infected Healthy People who are asymptomatic.
XMRV Live Virus = ME CFS People (severe)?
XMRV Live + Antibodies = ME CFS People (Less severe)?
Thanks for any ideas, great forum by the way, a god send.
Would it matter which one we get done?
E.g. (I'm guessing here)....
XMRV Antibodies = Infected Healthy People who are asymptomatic.
XMRV Live Virus = ME CFS People (severe)?
XMRV Live + Antibodies = ME CFS People (Less severe)?
Thanks for any ideas, great forum by the way, a god send.
With this, you may have no active virus particles in the blood, yet the person may be very sick. This may be the case in the 2-5% currently testing negative for XMRV (just wild speculation on my part).
For this reason, one of my docs (Natelson) did PCR tests for HHV-6 of CSF (following a spinal tap).
Time will, tell, but at this point, I think that people should avoid jumping the gun.
I posted more on the XMRV Testing Thread