Judy Mikovits email advice regarding XMRV negatives and variants.

bullybeef

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I recieve the following email from Dr. M. I did post this elsewhere, but it has been suggested it maybe relevant to all:

Regarding the ramifications of being XMRV negative. First of all the current diagnostic testing will define with essentially 100% accuracy XMRV infected patients. The negatives are more difficult as there are additional tests that can only be done in the research lab at this time and not in a clinical setting such as VIPDx. The most important test is to check your blood for an antibody to the virus. If you are positive in the serology test and have an antibody to the virus, you have evidence of infection but at the time your blood was drawn the amount of virus in your blood was below the limit that could be detected by the most sensitive test currently available clinically, which is the the one done at VIPDx. that means while you tested XMRV negative..it could be a false negative.

We are testing the hypothesis that XMRV is to CFS as HIV is to AIDS. There are many people with HIV who don't have AIDS (because they are getting treatment). But by definition if you have ME you must have XMRV.
I make that analogy in presentations because CFS is such a waste basket diagnosis and testing the hypothesis that XMRV is a major player in ME/CFS like HIV in AIDS, will get treatment and research money into biomedical research for XMRV and end the psychiatric bias that has been the history of the disease. Do I think there is only one XMRV?? Absolutely NOT..there is an HTLV2 and an HIV2 both of which have much milder symptoms associated than the variants HIV-1 and HTLV1? What if the first XMRV to be associated with ME/CFS is not the most pathogenic variant. What if there is a much more pathogenic XMRV-2 out there?? In the UK in China??

Maybe the reason others don't find it is because they will not do the BIOLOGICAL VIROLOGY and ISOLATE THE VIRUS like the WPI and VIPDx have done. NO ONE else has even ATTEMPTED the experiments in the Science paper. Electron micrographs don't lie..and a budding virus or immune response cannot be a contaminant..

We do stand behind our hypothesis that somehow XMRV is hurting your immune system so that it cannot fight ordinary pathogens and after a long time of chronic expression of XMRV (or a short time if you have other genetic immune deficiencies) your immune system simply cannot function normally and you become permanently disabled...

Please feel free to discuss my response with your group..We will test everyone that tested negative to see if we can find antibodies in your blood and look for that variant that we describe..that is evidence of XMRV infection. There is so much that we don't know about the virus. Recall that the first isolation of HIV was from a single AIDS patient published in late 1982 and it was not until 2 years later that it was associated with AIDS with the kind of evidence that we put into that first paper. Only a few short years later there were effective therapies. We learned a lot then and we are using every bit of that knowledge from 30 years ago (we were there and have worked on nothing else for 30 years) to understand this human retrovirus. Please don't hesitate to email me directly if you or anyone in the group has questions/concerns. To be clear..I do think even if you tested negative now that you are likely still infected with XMRV or its closest cousin..

Kind regards,

Judy
 

Alexia

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Thank you so much for sharing this information BB. We have so little information that it's VERY important to share it as much as possible. There is such a long way to go! the knowledge is so limited at the moment and we have been suffering for so long, sometimes I get desperate. Good luck with your test BB.
 

Bob

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bullybeef, thanks so much for posting this... it's fascinating...

We will test everyone that tested negative to see if we can find antibodies in your blood and look for that variant that we describe..
To be clear.. I do think, even if you tested negative now, that you are likely still infected with XMRV or its closest cousin..
...The WPI are not going to give up on people, and all negative results will be retested when the testing techniques are finalised.

Recall that the first isolation of HIV was from a single AIDS patient published in late 1982 and it was not until 2 years later that it was associated with AIDS with the kind of evidence that we put into that first paper. We learned a lot then and we are using every bit of that knowledge from 30 years ago (we were there and have worked on nothing else for 30 years) to understand this human retrovirus.
...so we need to be patient... the WPI are working hard on this virus, and they know what they're doing.

Do I think there is only one XMRV?? Absolutely NOT..there is an HTLV2 and an HIV2 both of which have much milder symptoms associated than the variants HIV-1 and HTLV1? What if the first XMRV to be associated with ME/CFS is not the most pathogenic variant. What if there is a much more pathogenic XMRV-2 out there??
...wow, does this mean that Judy is actively looking for XMRV-2?

Maybe the reason others don't find it is because they will not do the BIOLOGICAL VIROLOGY and ISOLATE THE VIRUS like the WPI and VIPDx have done. NO ONE else has even ATTEMPTED the experiments in the Science paper. Electron micrographs don't lie..and a budding virus or immune response cannot be a contaminant..
...in other words: 'we know what we're doing, and we are doing it methodically', and no one can dispute that this virus is present in ME patients, at least in the WPI's research samples.

Please don't hesitate to email me directly if you or anyone in the group has questions/concerns.
...she's so kind!


Is Judy Mikovits a warrior?!
 

omerbasket

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When all this would be over, and even if somehow XMRV would be found to not be associated with ME/CFS, I would have very very good things to say about Dr. Mikovits, Dr. Peterson, Dr. Lombardi, the other scientists and people that took a place in that study, and offcourse, the Witthemore family.
 

ukxmrv

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Yes, she's our own Boudicca!

In one of the talks she spoke about the possibility of different XMRV's and said that a colleague was looking at something in China. They contacted her I think. There was also an email to this forum last year I think.
 

fingers

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Knowledge -> Wisdom

Thank you so much for sharing this information BB. We have so little information that it's VERY important to share it as much as possible. There is such a long way to go! the knowledge is so limited at the moment and we have been suffering for so long, sometimes I get desperate. Good luck with your test BB.
It's not, Alexia. There's masses of it. Just that no one has been able to make sense of it yet.
 
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Interesting about different XMRV. She is stronger in this e-mail about that. Before she was more of "it's possible." Sounds like here she is saying it is very likely. And she says this might explain different levels of symptoms.

I wonder how likely it is there are two XMRV's considering the virus does not replicate often.

Very interesting.

Tina
 
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Fantastic post Bully!

Exactly the kind of message we need right now. Exactly what we would hope Judy M is STILL thinking. Very important for people to hang onto this message. Remain patient. I have 14 yrs on my CFS/ME CV. Some have twice that and then some...

Kind - yes

Warrior - no doubts

I hope one day she gets her due regard.

What Omerbasket said about Judy M and the whittemore's too. I would like to second that.
 

Kati

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i am in contact with a man who contracted CFS after unprotected sex and tested positive for HTLV (not sure which type). are CFS doctors testing for this virus? i think i may have been tested but will have to dig up old papers....

dr. mikovits will win the nobel prize...people have won for less, right?

i think the number of people reporting positive results with azt will very slowly start to trickle in, too.

wessley will not even be a footnote in medical history. what a buffoon.
Interesting Mandy, will ask to be tested for HTLV, but I don't think there is a treatment for it.

Nobel Prize, she certainly deserves it.

Have you noticed how Reeves quietly left the scene exactly a month ago now???
 

bullybeef

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Another interesting point is, upon looking for any further updates regarding XMRV on the CDC website, they make no reference to neither the UK studies, or the Dutch study. Wonder why?

Why is the US XMRV is taken seriously, without the need of any independent replication (or verification) studies, apart from the NCI and the CC replications (which were at the request of Science journal in order to accept the paper)?

If it weren't for the UK and Dutch studies, there wouldn't be any negatives or question marks.
 

Andrew

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Why is the US taking XMRV so seriously, without the need of any independent replication (or verification) studies, apart from the NCI and the CC replications (which were at the request of Science journal in order to accept the paper)
Probably because we have had three out of three US studies that were positive for XMRV. One CFS study and two prostate cancer studies. It's XMRV that is getting them all excited, not so much CFS.
 

hensue

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Face it and I mean no disrespect to men. Look at erectile dysfunction it is a man's world and so be it if prostate cancer will lead us to an answer or to xmrv I am all for it.

Please, I want all cancer cured both my parents died of cancer.

Take for instance viagra??? Have you seen any women's viagra all over the tv?

You do realize though behind every great man there is a greater woman lol!
 

gracenote

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Probably because we have had three out of three US studies that were positive for XMRV. One CFS study and two prostate cancer studies. It's XMRV that is getting them all excited, not so much CFS.
It's been great to notice, though, that in these new XMRV studies they are mentioning CFS as if this is a normal thing to do! When has THAT ever happened with chronic fatigue syndrome?

Detection of a gammaretrovirus, XMRV, in the human population: Open questions and implications for xenotransplantation
XMRV (xenotropic murine leukaemia virus-related virus) is a gammaretrovirus that has been detected in human patients with prostate carcinoma, chronic fatigue syndrome (CFS) and also in a small percentage of clinically healthy individuals.
Susceptibility of xenotropic murine leukemia virus-related virus (XMRV) to retroviral restriction factors
Xenotropic murine leukemia virus-related virus (XMRV) is a recently discovered gammaretrovirus that has been linked to prostate cancer and chronic fatigue syndrome.