William Switzer - CDC looking for XMRV and MLV in lab workers!

[spacee]

And I still have my positive lab to the "CFS Novel Retrovirus" in 1991. Sick since 1986. And a patient at the NIH under Fauci and seen by Straus.
What gives????

 

[Navid]

And I still have my positive lab to the "CFS Novel Retrovirus" in 1991. Sick since 1986. And a patient at the NIH under Fauci and seen by Straus.
What gives????

If i were you, I would email fauci, mangan, lipkin, sebelius, unger, koh, etc and tell them your story including a copy of the test results and see if one of them can explain what is going on, what happen to your health. have you also tested poz for xmrv....if so, your story is even more compelling and demands even more explanation.

i think judy m would be interested in your case too.

you can find all of the above ppl's emails on this website or thru google. some of these ppl even respond personally to emails.

i would demand an explanation.

 

[George]

I want ta know something, if ya have a peepee test and it comes back positive in line with the people who come back positive for the culture test, can you pee a contaminate???? I mean that would be a trick wouldn't it?

I think we might want to ask Dr. Klein this very important question since he is working on what looks to be a successful peepee test. (first reported at the 1at annual XMRV conference in Sept 2010)

 

[Navid]

It seemed like her intent was to distance the HIV community as much as possible from the CFS community by trying to dismiss us as conspiracy theorists (hmmmm, why is that ringing what seems to be such a recent bell?). Maybe it's just my being a bit dark at the moment.

FWIW, I did write her yesterday and ask that she explain the joke to me as I apparently missed the point unless it was just to denigrate CFS seriously ill patients.....CBS

I believe that was her intent too.....to show ME/CFS ppl who believe their disease to be caused by a RV as kooks, denialists.

I wrote her a letter of outrage and dismay. I have been a supporter of the HIV/AIDS cause since the early 80's I have 100's of friends who died or have been saved by ARV's. I remember when young men were afraid to tell their parents they were dying of AIDs and instead lied and said they were dying of cancer....this is what was said at their funerals.....and now 30+ years later I am being laughed at and denigrated by a leader of one of their organizations.

I remember the days when ppl in SF moved across the sidewalk or street when they saw a person with Karposi 's Sarcoma....how in God's name could an AIDs activist treat another group of ill people with a similar form of disrespect...move away, distance yourself from them....don't let their disease "touch" you.

And please do tell me how many ppl with AIDS started AZT before it was approved as a treatment by the FDA and the US Govt...hundreds of thousands.

So HOW DARE this woman laugh at us, scorn us...all for her 2 minutes of "fame" in front of a room of non-believing retro-virologists.

She owes us a public apology and I hope she hears and heeds our calls for one.

I anxiously await the day when this woman and the boarish, manipulative Stoye pay for the "sins" they committed at this CROI meeting....because life does come round full circle:yinyang: and a price will be paid by both of them for their cruelty and disrespect to us.:Retro mad:

 

[Ecoclimber]

Miller's Comment on the xmrv and mlv in lab workers

This synthetic virus that I made used parts from standard murine leukemia viruses and in that sense is not very special. It has been widely used as a positive control virus in tests to detect potential replication-competent retroviruses in retrovirus vector preparations, especially those intended for human gene therapy use. To elaborate, retroviral vectors used for gene therapy are supposed to be incapable of replicating, but in the early days there were some examples of replicating viruses arising during vector production. To make sure gene therapy recipients did not get these replicating viruses, the vector preparations are tested for replicating virus. The synthetic virus I made has the properties expected of the viruses that might arise, so it was used as a positive control to make sure the assay employed was capable of detecting potential replication-competent virus contaminants.

The other report you found about spread of this recombinant retrovirus in cultured cells in a lab can occur with improper cell culture technique. Lab workers take precautions when manipulating retroviruses that can infect human cells, such as the one I made, but can be exposed by accident. However, these viruses, like XMRV, are adapted to grow in mice and should not do well in humans because of natural human antiviral defenses. Likewise, house cats are known to be infected with retroviruses that cause leukemia in cats, and although some can grow in human cells, these viruses have never been found to transmit to or cause disease in humans.


Eco

 

[gracenote]

I love what Alter said at the end of Demystifying Medicine (may not be his exact words):

You need to first decide that this is a disease worth studying.

 

[CBS]

This synthetic virus that I made used parts from standard murine leukemia viruses and in that sense is not very special. It has been widely used as a positive control virus in tests to detect potential replication-competent retroviruses in retrovirus vector preparations, especially those intended for human gene therapy use. To elaborate, retroviral vectors used for gene therapy are supposed to be incapable of replicating, but in the early days there were some examples of replicating viruses arising during vector production. To make sure gene therapy recipients did not get these replicating viruses, the vector preparations are tested for replicating virus. The synthetic virus I made has the properties expected of the viruses that might arise, so it was used as a positive control to make sure the assay employed was capable of detecting potential replication-competent virus contaminants.


The other report you found about spread of this recombinant retrovirus in cultured cells in a lab can occur with improper cell culture technique. Lab workers take precautions when manipulating retroviruses that can infect human cells, such as the one I made, but can be exposed by accident. However, these viruses, like XMRV, are adapted to grow in mice and should not do well in humans because of natural human antiviral defenses. Likewise, house cats are known to be infected with retroviruses that cause leukemia in cats, and although some can grow in human cells, these viruses have never been found to transmit to or cause disease in humans.


Eco

Thanks for Dusty Miller's take on this. I found it interesting that Stoye, Coffin, Kathy Jones, and others during the Q & A session seemed far more concerned that labs were unaware of the dangers of transmission of active virus in handling MLVs and that they needed to find an alternative to some of the cell lines presently in use.

 

[Sean]

"A man can endure the worst pain ..... of others."

I have heard it as:

"A man can endure any suffering, except his own."

 

[Cort]

I want ta know something, if ya have a peepee test and it comes back positive in line with the people who come back positive for the culture test, can you pee a contaminate???? I mean that would be a trick wouldn't it?

I think we might want to ask Dr. Klein this very important question since he is working on what looks to be a successful peepee test. (first reported at the 1at annual XMRV conference in Sept 2010)

No you can't. If Klein can show that his peepee test reflects prostate cancer XMRV infection then he's got something.

 

[alex3619]

Hi, someone made a very good point in response to my infected lab worker hypothesis and related argument, but I am having trouble finding it to quote it. Essentially they said that while it might be the case that XMRV may be due to recombination in xenografts, the practice of xenografting goes back to the early 1900s.

The 1934 Californian epidemic of what looks like ME coincides with an outbreak of mouse encephalitis (I think it was George who might have pointed that out). There was intense research on mouse encephalitis going on there. Both epidemic and research might have occurred in the same hospital, but I haven't looked into that.

Even if XMRV was a recombination event, it might still be very much older. Recombination may have occurred millions of times over the last century, with only a handful of viable viruses as a result. XMRV could be in a small window of viable possibilities, so a low probability of it occurring by chance may be nullified by many millions of chance events. We just don't know. My mantra?: We need more research. So even if the origin of XMRV is this recombination event, it is still to be proved that it disproves causation of diseases that have been with us for a while.

Bye
Alex

 

[Cort]

The people on here that have been sick for 20 or more years couldn't have up and got infected 10 years or more after the became sick. The 1996 - 1999 theory is impossible in my eyes or virutually impossible.

What if Alex theory is correct. What if the virus has gone undetected in the human population for so long, that in fact humans have passed the virus back into the labs.

How do they know that the xenograft wasn't contaminated by a lab worker. I'm not buying this contamination thing completely. The virus is there and if it is proven to be infectious, does it matter where it came from? I don't care just get it out of me!!! (at least make it behave)

Its true that once its created the virus has the potential to do anything. Once its created it has the potential of leaving the laboratory and moving out into the population (and then possibly coming back into the laboratory).

So far as I can tell the crux of the matter is the genetic diversity of the patient samples. If the XMRV samples from prostate cancer and CFS patients were more diverse genetically than found in the virus produced in the lab then then you would think - aha! they came from humans and then got into the lab. (Population sources are almost always the most genetically variable).

However, at least at this point, they actually seem less diverse than XMRV produced in the lab - even though the samples come from humans from all the over the US and Europe - that suggests they came from the lab virus and did not infect humans - where they would have mutated - but simply got into lab cultures and reagants and ultimately (somehow - nobody has shown how yet) into the WPI and Silverman samples.

There are only two complete sequences of XMRV from CFS patients - so it is conceivable that they are missing some of the variability found in the CFS population. However the WPI reported that all the gag and env sequences in their CFS patients were very alike - which suggests that the variability is not very high. Still we don't know until we know.

The other big problem facing XMRV is that even if it is a 'contaminant' most labs are still not finding it... in autism or FM or in previously positive CFS patients or in HIV patients or anywhere. Except for the Alter/Lo and Hansen findings - which are for MLV's - we still don't have an independent lab that has actually found XMRV I don't think in CFS patients.

 

[carolinetanderson]

Hi Cort, XMRV was found in three ways, not just in the way the contamination studies evaluated it. That can't be left out of the discussion.

Also, the fact that four contamination studies were released at the exact same time to produce the most press is very suspicious to me. Who coordinated that? It wasn't an accident.

As for all of the studies that you mentioned that haven't materialize so far, they have a very different level of standard to meet than any anti-XMRV study. Those studies cannot have even one flaw or they will be attacked from all sides. The scientists involved could have their entire careers ruined. I for one would be checking and double checking every aspect of my study before releasing it, trying to second guess what the critics will say. The anti-XMRV folks have the advantage. They don't have to prove anything. They can fire off criticism first and worry about what's right afterward.

 

[SOC]

Drop the entire world a note....what a great line.....Go Judy Go!!!!!! I cannot wait for that note to be dropped : )

thanks DB....My outrage matches yours. I sent a scathing Note to that "AIDS" woman and stoye...it was very cathartic.

Just a point, folks... we might make a bigger impact writing to her organization/boss and pointing out how her ridicule of patients seriously ill with an unidentified illness (in much the same way HIV/AIDS patients were mocked 20 years ago) reflects very badly on their organization.

 

[SilverbladeTE]

Cort
but what if XMRV came from a contaminant in a common vaccine...ie, one base origin, with only a little lateral spread ot those very closely associated with victims and thus, little drift in the virus?
given the outbreaks are common with hospitals and schools (or similar instituions) is a vaccine origin not very likely?

or...
forgive my gross ignorance and if this is yet another a stupid question of mine, lol, but could MLVs be part of very old..sigh can't recall name, great, losing more and more of my memory...the 1/3rd of Human DNA that's largely a viral mess....can we state it is not some ancient part of common human DNA so old it has changed little between modern individuals, but can still expresses itself in the right circumstance?

 

[Christopher]

If this is indeed was from Judy, hopefully there was permission to post.

I second that. That might not be something that she would want out in the public eye. Might be considered bad for her reputation. Did you check with her first before posting this?

 

[Lynne B]

Hi, All, I've been reading this site since about October 2009 but I haven't posted in a forum before. I've been ill since 1996, but I'd given up hope of finding any solution to the disease until the Lombardi study. It's been very exciting following the posts here although I've been too busy trying to understand the science to add my two bob's worth. But I've the feeling some very important people have been overlooked so far in this discussion, namely the infected lab workers. I'm sure nobody here would wish our disease on anyone else, so I think we should regard this as an important occupational health and safety issue and extend our sympathies to the lab workers. Even if their infection isn't due to their lab work investigating XMRV, I hope their positive status doesn't develop into anything like ME/CFS and that they don't inadvertently pass the infection on to anyone else. And for our sake I hope this unfortunate turn of events will prompt further research into treatment that can help us as well.

 

[VillageLife]

However the WPI reported that all the gag and env sequences in their CFS patients were very alike - which suggests that the variability is not very high.

The combined results suggest (1) that XMRV was recently transmitted from mice to humans, either from a single source, or at least from a single (sub) species of mice, and (2) that all XMRV-positive individuals known today were infected with this newly emerged virus only recently, as a very high sequence identity is normally only seen after a direct retrovirus transmission.

 

[free at last]

Its true that once its created the virus has the potential to do anything. Once its created it has the potential of leaving the laboratory and moving out into the population (and then possibly coming back into the laboratory).

So far as I can tell the crux of the matter is the genetic diversity of the patient samples. If the XMRV samples from prostate cancer and CFS patients were more diverse genetically than found in the virus produced in the lab then then you would think - aha! they came from humans and then got into the lab. (Population sources are almost always the most genetically variable).

However, at least at this point, they actually seem less diverse than XMRV produced in the lab - even though the samples come from humans from all the over the US and Europe - that suggests they came from the lab virus and did not infect humans - where they would have mutated - but simply got into lab cultures and reagants and ultimately (somehow - nobody has shown how yet) into the WPI and Silverman samples.

There are only two complete sequences of XMRV from CFS patients - so it is conceivable that they are missing some of the variability found in the CFS population. However the WPI reported that all the gag and env sequences in their CFS patients were very alike - which suggests that the variability is not very high. Still we don't know until we know.

The other big problem facing XMRV is that even if it is a 'contaminant' most labs are still not finding it... in autism or FM or in previously positive CFS patients or in HIV patients or anywhere. Except for the Alter/Lo and Hansen findings - which are for MLV's - we still don't have an independent lab that has actually found XMRV I don't think in CFS patients.

The spanish have found it Cort, Gemans too though not CFS, but immuno compromised patients. and in saliva from the throat, agreed rather different. but both are independent of the WPI But thats it i think ? unless we include Kenny de melier ( red labs isnt it ? )

Whats interesting is some positives from the wpi were not able to be detected, here presented at the CROI, which is rather odd from a contamination of blood by live viruses scenario, clearly if the WPI was detecting live virus contamination ( as is now the new hot topic ) then how does one explain this rather unusal finding of a technique that could detect XMRV in monkeys, but failed to detect a suspected live virus contaminent from the wpi samples ? its just getting weirder and weirder, one can only conclude that if the live virus contamination theory was correct ? then in this example the detection method was some how failing between monkey and human samples. which is more than a little odd. Its downright bewildering. and possibly makes us less certain of detection methods across the board, regardless of what we are being told. Heres the proof if the live virus contamination theory really does hold true for the WPI samples

qoute
Kearney described a technique that could detect of single copy of XMRV or MLV in the same assay (X-SCA) and an approach for sequencing single XMRV genomes. Using X-SCA, Kearney was not able to detect XMRV in 26 CFS samples from four patients who were reported to be XMRV-positive in the Lombardi paper, nor in 134 prostate cancer patients of unknown XMRV status. However, she was able to detect XMRV DNA in the blood of two macaques consistently up to 80 days post-inoculation. END

Agreed this technique maybe new, but it could still detect it in monkeys, and from what it appears consistently so. These kind of discrepencies do not fill me with trust with much of what is going on, how can it. a theory is produced that explains nicely why the wpi almost exclusively are finding xmrv ( live virus contammintaion ) yet a detection method that is clearly detecting xmrv, cant find such said live virus contamination. to ignore these discrepencies is foolish in my opinion. I belive that this is proving some detection methods, seem to be failing, at least intermittently. and if thats so how many ? and what types are detecting it, then failing to in human samples Maybe i should add ill bet judy gave this group her 4 strongest samples, meaning ill bet they grew xmrv in culture, and was positive for serology too. so a conclusion that these 4 samples were false positives by the WPI seems a little unlikely if im right about the detections done on these samples, before being shared with this group, who apparently can detect it, but apparently cant as well lol This is turning into one of the biggest medical mysterys of all time is it not. Its just nuts, talk about a non ME brain ach

 

[Rrrr]

I am a bit late in the conversation, but what bothered me on top of being worried about lab worker is at that same Q&A period this lady from the audience commented on the similarity of HIV deniers and ME/ CFS XMRV + Patients on ART. Basically she said we were all fruitcakes.

all they want to say is ME/ CFS is not an inFectious disease but what Lombardi et al. Saw was contamination. However their lab workers may be infected with a very virulent retrovirus. Do you see the dismissall all lover again?

i, too, was shocked at her comment. she was jeanne berman from aidstruth.org, and i can't believe someone who dedicates her life to truth could be snookered by these xmrv denialists (stoye, etc). i wrote to her to ask for further comment, and i hope others will do the same. i emailed her via her website. best to not be angry, or she will certainly think we are fruitcakes.

 

[Rrrr]

HERE's MY NOTE TO BERGMAN:

I have been ill with CFS for 33 years. I have lost 3 decades of my life to this hideous, and FYI very debilitating neuro immune disease. And I am not alone. CFS affects btwn 1-4 million Americans, and approx 17 million people worldwide. According to Dr Nancy Klimas, who splits her practice between HIV and CFS, her HIV patients are "hale and hearty" compared to her CFS patients, who are often desperately ill and completely unable to participate in life.

Your comment at the recent conference on XMRV, which reduced the CFS patient community to a bunch of anti HIV believers and conspiratorial nut jobs, was really quite reprehensible. The suffering of very sick people is not a joke. Shame on you for making it into one.

excellent!!!!