Judy Mikovits is playing whack-a-mole in her responses to the legion of anti-XMRV papers published to date:

She bitches about one thing, or another thing, as the papers are published, but she misses the big picture. Its not that there are moles randomly popping up. The problem is youre entire 3 acre lot is full of fucking moles. Its not one thing or another that is ‘the problem’. A negative paper here or there wouldnt be a problem. The problem is the implications of all the negative papers taken together in their entirety.

I really want to take a post to sum up everything that has happened thus far and put it together in a way that every damn one of you can understand (except Mikovits, who is apparently willfully or genetically incapable of understanding this information).


People all over the world cannot ‘find’ XMRV in CFS patients
Using the same, similar, or superior PCR protocols, investigators in the following countries cannot find XMRV in CFS samples or their healthy controls*:

  • China
  • Germany
  • Netherlands
  • UK (>x2)
  • USA (>x3)

This is not a matter of a lab here or there that cannot independently replicate Lombardi et al. It is a collection of laboratories from all over the US, and all over the world. To ‘believe’ in ‘XMRV–>CFS’, you have to believe that despite the collective experience of every investigator involved in these negative studies, they are incompetent. High school students do PCR in my lab. My undergrads this summer did it on day 2 in the lab. But everyone else in the world is incompetent, and physically unable to do what, apparently only Judy Mikovits and her laboratory can do. That is completely and utterly without precedent.

However, there is always the option that all of these labs are in cahoots in a conspiracy against CFS patients and Judy Mikovits, a hypothesis that Mikovits herself has encouraged since the day the first negative paper was published. This is also a conspiracy encouraged by HIV Deniers, and I have spoken about it frequently. My response to Mikovits and HIV Deniers is the same: 1) Where is the evidence? and 2) On what planet, in what dimension do you reside, where China would happily conspire with the US and UK?

* Minimum, I am sure I missed some

… or anyone else where we should ‘expect’ to find XMRV infection (‘expect’ via logic or assertions from Mikovits herself)
It is not just that other labs around the world cannot find XMRV in CFS patients. Labs all around the world cannot find XMRV in expected populations, or the places Mikovits herself has told labs to look (autism, MS, etc) The following countries cannot find XMRV in HIV+ patients, HCV+ patients, MS patients, Autistic patients, arthritis patients, transplant recipients, random sick children, or random sick adults*:

  • Cameroon
  • France (x3)
  • Italy (+2)
  • Germany
  • Netherlands
  • Spain
  • Switzerland
  • Uganda
  • US (+5)
  • UK

In addition to all the labs that cannot find XMRV in CFS patients, all of the independent labs in these countries must also be a) incompetent, or b) in on the conspiracy.

That is ignoring the shocking finding that XMRV cannot be found in HIV-1 positive individuals not taking (or have ever taken) antiretrovirals– people who, as a whole, are populated with more viruses than HIV-1(-) controls. If XMRV were a real pathogen, even outside the context of CFS or prostate cancer, it should be found in HIV-1 positive individuals.

It is not.

* Minimum, I am sure I missed some

This lack of detection has nothing to do with ‘sequence diversity’ according to WPIs own reported sequences
A frequent excuse for why so many other labs cannot find XMRV via PCR is that there is ‘so much sequence diversity’ in XMRV, that other labs primers designed in-house cannot detect the variants in patients.

So… Judys lab, who just took a shot in the dark in 2009, could ‘find’ these wonderfully diverse XMRVs… while individuals actively setting out to find XMRV with primers and PCR technology that should be better (Real-Time >>>> nested standard PCR) cannot find it?

Furthermore, Levys group used Lombardi et als PCR conditions when looking at Group 1 patients, Lo et als in Group 2. Nothing.

And here is the bigger problem: There is no sequence diversity in the WPIs reported sequences. They are all the same relative to one another, and relative to a laboratory plasmid VP62 that everyone is using as positive controls in the negative studies. This is beyond obvious to even the most casual observers:
i-84f507875e16f72c7f070ab40370be16-VP62alignment-thumb-1779x467-65752.png
There is no excuse for why primers directed towards VP62 would not be able to detect the very sequences the Judy Mikovits herself as uploaded into GenBank. There is no diversity. The uploaded sequences of ‘XMRV from patients’ are VP62.

Here is a very quick-and-dirty phylogenetic tree:
i-f957806f183de1bd0609303c9c05f051-VP62tree-thumb-539x706-65755.png
The sequences of viruses found in different patients at different times from different parts of the country (world?) are virtually identical not only to one another, but a XMRV plasmid routinely used in labs.

Just to really drive home how absurd this is, here is an alignment made from the exact same region of XMRV in HIV-1, from only a small subset of HIV-1, Group M, Subtype C viruses found in different patients at different times from South Africa only:
i-5585cadfffd4e6ab5ec989213477e422-SubCalignments-thumb-1863x1125-65758.pngIn the WPIs liek, totally diverse sequences, there are only a handful of variations (strong majority of which are in one sequence, 1317, while others dont differ at all)– look for the black dots. Contrast that with the HIV sequences of the same region of gag– at almost every point, there is diversity in sequence. Think its a numbers game? Pick two HIV sequences at random– there is more diversity between those *two* sequences than there is in the entirety of WPIs ‘patient sequences’ and a laboratory clone.

If someone says other labs cannot ‘find’ XMRV via PCR because XMRV is ‘too diverse’, they are lying or stupid beyond repair.

The lab that could ‘replicate’ the WPIs findings didnt find XMRV
A paper was published by Lo et al ‘found’ MLV-like viruses in patients with Chronic Fatigue Syndrome. Not XMRV, MLV-like-thingies. Considering everything Ive written so far in this post, I guess WPI considered this a WIN!

Unfortunately, this paper would not have been published if the authors had simply run a BLAST search on their ‘sequences’ and noticed all they had done was discover mouse ERV contaminants. Or, if they were too busy to BLAST, if they had agreed to their reviewers request to map integration sites, they would have seen that they were mouse ERVs and contaminants (that has already happened with reported XMRV ‘sequences’ in prostate cancer when people take the time to map and pay attention to their results).

But they didnt. Probably going to end up retracting too. Good thing Randy Schekman isnt running a blog:

We’re publishing a science journal here. My strongest feeling is that the data that we publish, we want to be of the highest caliber. We’re not publishing a blog.

lol. Yes, youre publishing a journal that is too good for peer review (us plebeians have to abide) and too good for several XMRV negative papers also of high caliber science (not sensationalist enough for you). Yeah, no, you aint publishing a blog, I definitely agree with that.

WPI/VIPDx cannot detect XMRV in a logical manner using their own employees and their own reagents

Blood Working Group Phase IIb WPI results
Nested RT-PCR for MRV gag followed by sequencing of positive bands to confirm specificity

-RNA extracted directly from plasma

-Total nucleic acid extracted from PBMC and RT step performed

WB testing has not been completed (error discovered)

PBMC results:

-For Day 0, Subject 1 and the pedigreed negative control were positive (note on slide: investigation following decoding of results determined that there was a procedural error during PBMC sample extraction involving reuse of needles, employed to lyse cells and shear DNA, on sequential PBMC cell pellets.)

-For Day 2 only, Subjects 1 and 4 were negative as well as the pedigreed negative control
-For Day 2 only, Subjects 2 and 3 were positive

Plasma results: All subjects and the control were negative for both days

After Judy boastfully accused a group in the Netherlands of fraud to the media (SHE could find XMRV in the samples they sent her, yet they still published their negative paper!), the authors published this in a letter:

At the moment you reported your findings on the Nijmegen samples, our paper was under consideration of the BMJ (after being rejected after a 5-week review process by the Lancet). Since our findings were based on solid, sensitive PCRs (described in detail in our paper) that efficiently detected XMRV in a cell line, as well as in positive samples that were provided to us by Dr. Judy Mikovits, we suspected contamination of our samples in your laboratory, the more so as XMRV was detected at a similar frequency in CFS patients (2 out of 7) and healthy controls (1 out of 3). Of note, the samples that you found positive were repeatedly negative upon retesting in our lab. Given the robustness of our paper, we considered it scientifically premature to report this finding before having settled the reason for the discrepancy. To solve the discrepancy, we proposed to exchange cohorts on February 9. Unfortunately, to date we have not received any response.

Sometimes the positives are positive. Sometimes the negatives are negative. Sometimes the positives are negative. Sometimes the negatives are positive. Errors abound.

That is not the kind of consistent, quality results I would expect from a laboratory telling other labs that they are incompetent. That is not the kind of consistent, quality results I would expect from a laboratory telling patients that they are infected with a pathogenic retrovirus.

WIP/VIPDx do not have their own house in order. They are in no position to be accusing other researchers of incompetence.

There is a logical explanation for why WPI/VIPDx ‘finds’ XMRV and others dont: Contamination
It is not just that others cannot find XMRV where WPI/VIPDx tell them it should be.

Sometimes researchers can find XMRV.

And it is the result of contamination via contaminated reagents and/or contaminated cells lines, and contaminating DNA via VP62 or other XMRV plasmids is always a possibility.

Furthermore, the natural history of the contaminating DNA has been determined– It was a chance mouse ERV recombination event in the early-med 1990s, long after many of the diseases ‘associated’ with XMRV existed. XMRV cannot be The Cause of many diseases it has been ‘associated’ with unless it is a time traveling virus.

And this is not a ‘hypothetical’ contaminant. It is real, we know where it is, we know where it came from, and we can find it if we do not take the necessary precautions.
When contamination is appropriately controlled for, ‘positive’ samples are suddenly negative, while positive controls remain unchanged. One might not necessarily fault the authors of Lombardi et al or the prostate cancer papers for not knowing all of this information about contamination before. But they do now. And Mikovits response is not to investigate the issue. It is to deny, deny, deny.

PCR is not the only non-reproducible experiment
Mikovits likes to focus on PCR. Acts like its some mystical magical potion she learned from Snape at Hogwarts, and no one else can do it right. Besides, she found XMRV lots of other ways too!

Minor problem: No one can replicate those findings either.

No one can find specific anti-XMRV antibodies in patients. Generic whore antibodies that will stick to any ol MLV-like-thing that walks by, and is non-neutralizing. Mindless complement. No anti-XMRV antibodies as we would know them.

No one can find XMRV virus, as assayed by direct RT-PCR, culturing for weeks and looking for numerous XMRV proteins or increases in RT activity or increases in XMRV RNA over time.

Granted, the one thing that other labs have not tried is to take an EM of XMRV budding off of infected patients cells. Well, if you want pictures of viruses– I can show you pictures of viruses. Treat cells with epigenetic modifying reagents like, say, 5-aza-2′-deoxycytidine, and youll get all kinds of viruses budding off to take pictures of. But they are ERVs. Not real infectious agents. You can get all kinds of crap coming out. But Mikovits knew that. She had done epigenetics research before.

What we did, after the paper was published, we went back and we looked with all four assays for evidence of XMRV in those PCR negatives. Because now we know that indeed those negative samples may have evidence of infection, and what we found was that 19 of the 33 had antibodies in the plasma. We found transmissible virus in the plasma of 33 of those people, and then we looked at that latent virus because the company I used to work at here in Santa Barbara was called Epigenics, and it was developing methylation-inhibitors for epigenetic silencing, and that’s what happens to viruses. So we used Decitabine, which is a demethylating agent that opens up the genome and turns on the virus and found that there was latent virus in 10 of those people. And when we summed it all up and tabled it out, 99 of the 101 patients in the Science paper had evidence of XMRV infection.

XMRV, ERVs, whatevs. lol.

There are numerous endogenous hurdles to XMRV infection of humans, assuming humans were ever genuinely exposed
Zoonotic events are not childs play. Turning a virus native to bats or fish or reptiles or crickets or tulips into a malicious pathogen infecting humans worldwide is no easy feat. Its not like we can shoot a vial of tobacco mosaic virus into your veins and alovasudden your leaves are wilty and discolored. Viruses are adapted for their hosts, and sometimes a virus just cant takeover a host no matter how hard it (or humans) try. A prime example of this is a problem we have in the HIV-1 research world– we have no small-animal model for HIV/AIDS. Our go-to animal friends, mice, cannot be infected with HIV-1, no matter how much virus we pump in their little veins. One of the many reasons why this happens, is because your (and mice, and every organism) has its own way with dealing with pathogens, and some pathogens just cannot handle it.

We know of at least three ways XMRV cannot handle humans:

  • APOBEC – Retrovirus gets in, APOBEC stows away in babby viruses, lethally mutates babby viruses when they try to infect another cell
  • Tetherin – Ties babby viruses to the surface of infected cells
  • Complement – either antibody independent complement or complement mediated by generic V-D-J recombination neutralizes XMRV

Thats just what weve found so far.

XMRV is non-pathogenic in animal models
Pump a ton of XMRV into a macaque, absolutely nothing happens. No fever, no lethargy, and certainly none of them suddenly became obsessed with Simon Wessely. If you chop up these poor monkeys (and the poor control monkeys) for no goddamn reason and put their guts in a blender, you can kinda sorta find XMRV all over. Which makes sense because you just put a shitload of XMRV in the poor monkeys.

Minor problem: Just because you can infect some cells in a creature (Im granting that premise), that doesnt mean the virus is pathogenic. It also doesnt mean that your pseudo-infected macaque is capable of spreading that virus to anyone else, considering the fact that putting an obscene number of viruses in the monkey IV accomplished jack shit, and that kind of exposure would never, ever, ever happen in the real world. Which brings me to…

There is no epidemiology for XMRV infection
What the authors of the animal studies should have done, is jack-off/finger the monkeys. Cause XMRV proponents have another minor problem: Its not just all the negative papers coming up. Its also the lack of certain kinds of papers. Epidemiology papers. There are none.

Would someone please explain to me how children get ‘infected’ with XMRV? Their mothers vaginal fluids/blood during birth? Breast milk? Heroin? Taking spooge up the pooper? VACCINES???

Fine! Where is the evidence?

If XMRV is like a gazillion other pathogens, it is transmitted during sex, so why did no one jerk off the XMRV infected monkeys? Why did they grind up and slice up their prostates and *hypothesize* XMRV could be spread sexually, when it could have been answered loverly by looking in monkey sperm for XMRV?

Oh wait, people have already done that in humans. Sperm from HIV-1 positive patients. They had HIV-1 in their sperm, but no XMRV.

There is no logic for how a virus contaminating a culture in 1993-1996 escaped the lab, overcame humans innate defenses against XMRV, traveled across the world infecting humans in the 1980s or years earlier. Whats the vector? How is XMRV traveling through time? Can we harness this knowledge for our own purposes without accidentally having our mom fall in love with us and breaking up our teenage parents before the ‘Under the Sea’ dance??? Will we figure out how to go back in time fast enough to save Doc from being shot????

*blink*

*deepbreath*

I had to get that out of my system. Ill go back and add links later.

Comments

  1. #1 ERV
    June 7, 2011

    Mike– VP62 is an infectious molecular clone. Basically, you can take this plasmid that has an XMRV genome in it, chemically treat it so it will go into a mammalian cell lines nucleus, and the cell thinks its just regular ol DNA. Those ‘transfected’ cells will produce (basically) clonal XMRV viruses that you can use in the lab, for anything from Western Blots or infectivity assays on different cells.

    ‘XMRV’ is a retrovirus that can infect numerous cell lines in vitro. To the point it probably contaminates various cell lines (lots of MLVs do, we have to be careful to remember that in HIV World).

    XMRV cannot replicate well (at all?) in human primary cells in vitro.

    Which is just another huge hurdle it would have to jump over to be a real malicious pathogen infecting humans in vivo.

    Maybe think of it as the resurrected ERVs? Scientists can purposefully cut and paste bits of ERVs together to create a Frankenstein-like retrovirus. They want to do that to study the retroviruses that humans (other animals) have already conquered in the hopes we can figure out how to defeat HIV-1. But these viruses were created on purpose by scientists. XMRV was created accidentally by scientists. Totally functional thing, but has limited/questionable real-world relevance.

  2. #2 ERV
    June 7, 2011

    brad– *shrug* Dunno! Gotta read the final paper– abstracts at meetings and the actual paper itself can differ significantly post-peer-review, plus Im not there to see any of the data myself :)

  3. #3 The AnaIyst
    June 8, 2011

    No, Im purposely ignoring your questions because Ive written about XMRV and HIV-1 several times before. Youre obnoxious, so I dont feel particularly compelled to fucking Google for you (you know, the search bar for this blog in the upper left?).

    Im sure you can figure it out, Ace.

    The anger you portray is well, strange.

    I think I asked a legitimate question. I have stated before that I think Mikovits is wrong about CFS/XMRV, but since I have the illness, it would be a pleasant surprise if I am wrong. I have changed my position several times, and my position that XMRV could be associated with CFS had a lot do do with hope. My references did not come from Mikovits’ “magic lab”.

    What we obviously don’t agree with is whether or not XMRV or XMRV-related retroviruses could be in the human population. I noticed there are several ways you can interpret the data in the abstract by Abbott, but I guess you would have to be at the conference to get the correct message.

    I am not making any claims that Judy Mikovits’ lab is right or wrong. I do understand that the published gag sequences look nearly identical (if not identical) to VP62, so there is no disagreement there either.

    I listened to TWiV, but what bugs me is how Alan Dove feels like he has to go on Twitter afterwards and make fun of XMRV and the WPI (to the point of starting conspiracy theories). There are enough conspiracy theories floating around from disgruntled patients, and now conspiracy theories are being generated from professionals? Does he want patients to take his views seriously, or does he just want to make them angry? If he wants patients to side with him, he is surely not taking the right approach.

    The fight of conspiracy theories has begun.

  4. #4 John
    June 8, 2011

    Brad, from what I’ve read those Alter/Lo/Hansen (and I suppose Beiger) MLV sequences are looking more and more like mouse ERV’s/DNA/contamination with every passing day. There are several independent lines of investigation to support this.

    1. At the recent NIH ME/CFS State of the Knowledge workshop, Dr. Coffin’s presentation* touched on the Alter/Lo MLV issue in which he stated the following- “So if we go back to our phylogenetic tree now (slide) and we put in these green dots- the samples that the Huber study found, we find that they just sort of plop all over this tree, more or less randomly- there may be a little concentration here but more or less randomly distributed across the tree. Here are all of the XMRV sequences for reference, here by the way (black dots). These again are quite similar, not identical but very similar to one another.

    If we now look at Mary Kearney, a colleague at NCI Frederick, she did an experiment where she deliberately took very very small amounts of DNA, she took 1/30th of a cell and distributed 1/30th of a cell over a lot of wells, amplified the DNA that was in there, sequenced those amplification products and so this is what you’d find from low level, deliberate contamination with mouse DNA (blue dots). You tell me if that looks different, really different in any significant way from this (referring to slide). And this for comparison is what was in the Lo et al study (red dots), again I don’t see any difference between any of these and I just can’t come up with any explanation for this pattern of sequences unless it really is due to that.”
    (slide)- http://i56.tinypic.com/snp9vm.png

    2. There is also a recent paper which reported basically the same thing from a slightly different starting point, ‘PCR Master Mixes Harbour Murine DNA Sequences. Caveat Emptor!’**, in which the paper both identifies sequences in PCR master mixes which almost exactly match the Alter/Lo MLV’s, including some which the authors state are replication incompetant (big red flag, if the ‘virus’ is replication incompetant how could it infect anybody?), as well as calls into question whether the repeat testing sequences done by Alter/Lo (which were taken from 8 patients whose samples were included in the original study and which were retested) could even come from the original sample sequences- “The exact variety and nature of our sequences show very close parallels to those reported by Lo and colleagues from patients with CFS especially in the set of samples from recent repeat isolations. They argue that the recent sequences (MLV001–MLV006; HQ601957–62) show evidence of viral evolution from an earlier sequence (assumed here to be cfs1 since this was identified in 18/21 sequences). However such evolution would be predicted to show monophylogeny. Our maximum likelihood analysis of these sequences is clearly inconsistent with such a prediction. In particular we see no obvious explanation for a sequence of the modified polytropic cfs1 type evolving into a polytropic sequence like MLV002 or MLV006, Similarly it seems implausible that MLV001, which shares with 9C a deletion encoding 15 amino acids of matrix (MA), presumably precluding virus replication, could evolve from cfs1. In the absence of evidence for replication competent MLV in the samples reported by Lo and colleagues, we believe that the finding of a population of gag sequences in the reagents, as well as the coincidence of a virtually identical replication incompetent MLV in our study and that of Lo and colleagues, must call into question the biological provenance of these sequences and therefore any conclusions drawn concerning their relationship to CFS.”

    So basically if Beiger’s findings look like Hanson’s findings and Hanson’s findings look like Alter/Lo’s findings, I wouldn’t be surprised if all ended up looking like contamination. Also if I remember correctly weren’t there like 40% of the controls that also were positive for MLV sequences in the Hanson study, which the authors justified as a result of all the samples coming from the same ‘outbreak area’? I think there is plenty of evidence that at least classical ME can and does occur in outbreaks, but I think I’m gonna say whateva to that being the reason why so many controls were also ‘MLV positive’ in that study.

    *NIH ME/CFS State of the Knowledge Workshop- http://videocast.nih.gov/Summary.asp?File=16575 (Coffin presentation starts at 154:00, Mikovits presentation is immediately prior in case you might be interested)

    **PCR Master Mixes Harbour Murine DNA Sequences. Caveat Emptor!-
    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0019953

  5. #5 RRM
    June 8, 2011

    @ John

    Great comment. However, the controls are “only” 20% positive in the Hanson study. What’s weird though, is that originally (as reported at the XMRV workshop), Hanson used only 10 controls (with 1 positive), while three months later (at the BPAC meeting), there were suddenly 20 controls (with 4 positives).

    Seeing as she is doing multiple tests, using different PCR machines (actually leading to different reults) on each sample, it’s hard to see how she could have switched the number of controls without any problem with respect to the study design/methodology.

  6. #6 Mike
    June 8, 2011

    ERV Many thanks for the explanation. I think I get it. And that’s some fascinating stuff you can do with your viruses!

  7. #8 Jack
    June 11, 2011

    @Karen are you making a point? Perhaps that this ‘proves’ something prior to 2009? That ‘they’ were already ‘aware’ perhaps?

    Only I am ‘aware’ that other forums are making a big deal out of this.

    I couldn’t access your Plosone link – but I think I have read that paper – could you repost please?

  8. #9 ERV
    June 11, 2011

    Karen– Its bad blog manners to post identical comments on numerous posts (discussions might start on separate posts, which makes them hard to follow and/or repetitive, plus its just weird).

    Ive written about both things before– MLV has been used as a gene therapy vector for a very, very long time. Curiously, the kids that were the recipients of MLV-based gene therapy got blood cancers.

    Not CFS.

    Not prostate cancer.

    Not Autism.

    Not ‘atypical MS’.

    Not Gulf War Syndrome.

    Not Chronic Lyme Disease.

    And they certainly didnt suddenly become obsessed with Simon Wessely and post obsessively on internet message boards.

    They got leukemias and lymphomas.

    And yes, we know that lots of cell lines are contaminated with lots of MLVs. Weve also known that for ages. Its problematic when working with HIV-1 if your output measure is RT activity (the assays do not differentiate between radioactive nucleotides incorporated by an MLV or HIV or any other RT), but if your output is HIV-1 specific (PCR, fluorescent reporter assays, Westerns, etc) youre fine. I have worked with the contaminated cell lines (outside of a BL3) for almost 6 years. Dr. Judy ‘bat shit insane bartender’ Mikovits worked with all the contaminated cell lines for years (supposedly. its increasingly difficult to believe anyone as dumb as that woman ever did HIV research). And yet there is no epidemiology (see my blog post above) that would suggest HIV researchers are more likely to get CFS than anyone else.

    All these ‘OMFG!’ papers you find, people in the field knew about a year (or more) before they were actually published. Its ‘news’ to random people outside the field. It is not news to us.

  9. #10 Karen
    June 11, 2011

    You can click PDF to get it.

    A Natural Human Retrovirus Efficiently Complements Vectors Based on Murine Leukemia Virus

    Beihua Dong1, Robert H. Silverman1, Eugene S. Kandel2¤*

    1 Department of Cancer Biology, Lerner Research Institute, Cleveland Clinic, Cleveland, Ohio, United States of America, 2 Department of Molecular Genetics and Virology, Lerner Research Institute, Cleveland Clinic, Cleveland, Ohio, United States of America

    Abstract Top

    Background

    Murine Leukemia Virus (MLV) is a rodent gammaretrovirus that serves as the backbone for common gene delivery tools designed for experimental and therapeutic applications. Recently, an infectious gammaretrovirus designated XMRV has been identified in prostate cancer patients. The similarity between the MLV and XMRV genomes suggests a possibility that the two viruses may interact when present in the same cell.

    Methodology/Principal Findings

    We tested the ability of XMRV to complement replication-deficient MLV vectors upon co-infection of cultured human cells. We observed that XMRV can facilitate the spread of these vectors from infected to uninfected cells. This functional complementation occurred without any gross rearrangements in the vector structure, and the co-infected cells produced as many as 104 infectious vector particles per milliliter of culture medium.

    Conclusions/Significance

    The possibility of encountering a helper virus when delivering MLV-based vectors to human cells in vitro and in vivo needs to be considered to ensure the safety of such procedures.

    Here’s a couple more: http://www.pnas.org/content/74/1​/353.full.pdf+html

    http://www.ncbi.nlm.nih.gov/pubm​ed/187776

  10. #11 dany
    June 11, 2011

    From Silverman’s 2008 paper on XMRVhttp://www.plosone.org/article/info:doi/10.1371/journal.pone.0003144 :

    Additional work is required to estimate the likelihood of XMRV-assisted propagation of MLV-based vectors in human population. So far, XMRV has been identified only in a limited number of humans, and the extent of its spread in human populations is unknown. Moreover, little is known about its tropism and the mode of infection. The association of XMRV infection with reduced function of RNase L may indicate that the virus could be sustained only in the individuals with decreased anti-viral responses [4], [5]. Moreover, co-packaging of XMRV and MLV genomes is yet to be documented, as is the recombination between the two viruses. Nevertheless, we believe that our observations warrant additional caution for the use of MLV-based vectors. In particular, they argue against the use of gene therapy vectors with functional LTRs; in favor of vector designs that minimize the likelihood of recombination with XMRV; and in favor of testing model human cell lines for the presence of MLV-complementing activity.

    Another concern arises from the possibility to encounter XMRV in the cultures of human cells, where the virus might appear as the result of viremia of the original donor

    A pool of MLV-based constructs introduced into such cells will likely evolve over time and may spread to other cells, especially in co-culture experiments. In addition, in some instances live attenuated vaccines could potentially become contaminated with XMRV. Importantly, our preliminary observations suggest the presence of an XMRV-like retrovirus in a cultured cell line (unpublished observations).

  11. #12 ERV
    June 11, 2011

    Stop copy/pasting shit on to my blog.

  12. #13 Unperturbted
    June 11, 2011

    “For example, is ERV’s attitude normal? (i.e. ERV’s reasonably fiery insults towards WPI and its staff on her blog.)”

    Posted recently on Ranciello’s blog by MeToo
    http://www.twiv.tv/2011/06/05/twiv-136-exit-xmrv/#comments

    Seems like you’re getting a lot of ,Ahem, attention these days not like sabotaging your career future

  13. #14 daedalus2u
    June 11, 2011

    I have seen nothing on Erv’s blog that would give me the slightest hesitation in hiring her. Everything I have seen would make me more likely to hire her.

    The type of person one hires reflects on what one wants to accomplish. If you want a yes-person who will toe the company line and spout what ever BS the PI wants, then no, Erv is not someone you would want.

    I don’t think that Erv’s blog will pose the slightest impediment to her future career.

  14. #15 ERV
    June 12, 2011

    daedalus– *rolleyes* Ive gotten this from XMRV True Believers a million times already. Its a thinly veiled threat trying to get me to stop covering this topic. But, like you said, its not really an accurate threat. Its cute that they are trying to tattle on me to Vincent, though, as if Vincent is unaware of my blog.

    Whats interesting about this one is the email ‘Unperturbted’ used for posting verification.

    Either ‘Unperturbted’ is a nutbar (likely XMRV True Believer) who stole an interesting internet personas email for commenting purposes, or this internet personality is going to have some explaining to do.

    I emailed the person for verification. We will see!

  15. #16 daedalus2u
    June 12, 2011

    Erv, I know, but the people who leave comments like that live in such an echo-chamber world with such a slim connection to reality that they never see comments they disagree with (because they get deleted) unless they come out into the “wild” where “free-range” scientists post.

  16. #17 John
    June 13, 2011

    These XMRV researchers must have really had an assfull of CFS patients by now. Here’s an example of the mecfsforums ‘XMRV elite detectives’* going on about 22rv1 shouldn’t be the standard positive control for XMRV because the amount of virus is so much greater than would occur in a natural infection, completely oblivious to the fact that 22rv1 being the ‘standard positive control’ is about sequence identity and nothing at all to do with viral titre.

    In fact, the above conversation references a short interview with John Coffin** in which the interviewer (a CFS blogger) asks Dr. Coffin if he had tested various XMRV-positive human cell lines for mouse contamination, and if not, why? The line of questioning gives one the distinct impression that the interviewer is completely unaware of the difference between XMRV contamination from XMRV-infected human cell lines (therefore no mouse DNA and no reason to look for mouse DNA) and contamination of samples from mouse DNA. Then the coup de grace are the comments to this ‘hard edged’ interview- ‘Go get ‘em!’, ‘Glad to see you on the case again, Mindy!’, etc, the people commenting being completely unaware that the interviewer just wasted this well respected researcher’s time as a result of not even understanding the issue well enough to know what fucking questions to ask.

    Then there are other ‘XMRV elite detectives’*** who don’t understand that recombination events similar to the one reported in the Paprotka Science paper aren’t themselves a ’1 in a trillion’ occurance, rather the 1 in a trillion was in reference to the chances of two seperate and independant recombination events (which are relatively common occurances in regards to the topic under discussion) producing exactly the same virus twice, independantly of each other.

    Oh Mylanta.

    * http://www.mecfsforums.com/index.php?topic=7846.0

    ** http://www.cfscentral.com/2010/12/dr-coffin-responds.html

    *** http://www.mecfsforums.com/index.php/topic,7812.msg94034.html#msg94034

  17. #18 Jack
    June 13, 2011

    @John

    Personally, (and this is only a personal thing you understand), but personally, I have neither the time, patience or inclination to read or indulge the ‘knowledge’ professed by those frequenting that particular forum – let alone that particular ‘reporter’: be she worthy of a pulitzer or not.

    I dare say many, many, old – so old – tales of injustice will be seen to rise phoenix-like from the ashes as D-Day looms ever closer.

    One is left wondering at times – where on earth such folk get the energy. Though I dare say when the fate of humanity hangs in the balance, such expenditures are indeed noble and will result in vindication.

    Though I thought AD had it about right recently:

    http://alandove.com/content/2011/06/our-cross-to-bear/

    Of course offence was – and is – still taken over his ‘take’ on these ‘enthusiasts’ – but inevitably, those taking offence seem to have rather missed his point…

  18. #19 David
    June 15, 2011

    Hey Abbie….I’ve been an admirer of your work since I heard your podcast interview with Dr. Kiki. On that program…..and here on your blog…..you show a consistent flair for originality and willingness to take and defend a position on issues that many of your peers are too timid to opine about (and you have a cool dog, too….and your taste of travel destinations is spectacular!). While I’m aware of my own self contradiction as I compliment this practice of yours while simultaneously whining about one of your frequently shared and most explicit positions….I’ll do so briefly if you’ll permit.

    I’m one who has hopes that a diagnostic test and efficacious treatment protocol for combating Chronic Fatigue will be delivered in as few minutes, days, months, years as possible. Mine is not an interest from a scientist’s, or student’s, or doctor’s, or bureaucrat’s, or executive’s perspective. You can likely guess, therefore, that I have a dog in this fight…..rather, I am a dog in this fight…..and my quality and it seems at times my quantity of life is at stake in this fight.

    What’s this have to do with you…..and your “Erv” blog? Not much….which is why I’ve never commented until now, and won’t belabor my disappointment or overstay my welcome in the comments section…..and I will continue to read your work. I just wanted you to know that it hurts me to read what often seems to be sound analysis by you that is tainted by a pervasive tone that I don’t quite know how to characterize other than to say it feels as though you don’t mind that it would, even if only collaterally, hurt me.

    I won’t begrudge any defense you offer in response…..and I promise in advance not to prolong this icky bit of negativity from me by responding to your response or criticizing a potential lack thereof. After all, as it’s said in the incredibly funny movie, “If Lucy Fell”…..how I feel about what you write is simply my perspective…..hmmmmm…..maybe it really is all in my head. ;-)

    I’m still a faithful reader of your work…..and still eagerly await the day when the scientific / peer reviewed / gold standard research compels you to write a post about a Chronic Fatigue study that passes your rigorous smell test and really does, in your opinion, show potential for……well…..you know. And Abbie, please know that I do believe you look forward to that day, too.

    CHEERS!

    David

  19. #20 Rebecca T
    June 15, 2011

    Lipkins bags are packed and hes heading for WPI.

    http://www.wpinstitute.org/news/docs/WPI_pressrel_061411.pdf

  20. #21 Jack
    June 15, 2011

    Yes to present something unconnected with XMRV; though others read too much into it methinks. How long before the knives come out again? Still at least Mrs W appears enthused…

  21. #22 anonymouse
    June 15, 2011

    @ David said

    “I’m one who has hopes that a diagnostic test and efficacious treatment protocol for combating Chronic Fatigue will be delivered in as few minutes, days, months, years as possible. Mine is not an interest from a scientist’s, or student’s, or doctor’s, or bureaucrat’s, or executive’s perspective. You can likely guess, therefore, that I have a dog in this fight…..rather, I am a dog in this fight…..and my quality and it seems at times my quantity of life is at stake in this fight.

    What’s this have to do with you…..and your “Erv” blog? Not much….which is why I’ve never commented until now, and won’t belabor my disappointment or overstay my welcome in the comments section…..and I will continue to read your work. I just wanted you to know that it hurts me to read what often seems to be sound analysis by you that is tainted by a pervasive tone that I don’t quite know how to characterize other than to say it feels as though you don’t mind that it would, even if only collaterally, hurt me.”

    What pervasive tone are you referring to? Have you been spending time in the echo chamber. I too am a person with chronic illness and I can tell you this, the world needs people like ERV to fight the pseudoscientific spewifications of certain members of the lunatic fringe echo chamber. Why on earth would you let the “tone” of a blogger hurt you? Tone Schmone. This is supposed to be about science, not about your poor tired fragile emotions. Is this just another pathetic attempt of the echo chamber to derail the blog, nice try, now get back to libelling D. Miller because he is publishing a new negative study.

  22. #23 ERV
    June 15, 2011

    David– You are confusing wanting to find ‘an answer’ and wanting to find ‘the right answer’. If XMRV were the right answer, I would be happy right with you, dude. I love studying retroviruses in all of their forms (I was pretty pumped about the XMRV–>CFS connection initially).

    XMRV is not the right answer.

    Sucks for patients.

    But pointing out XMRV isnt a real human pathogen, much less causing CFS, is not ‘against’ you any more than pointing out vaccines do not cause autism is ‘against’ the parents of autistic kids.

  23. #24 gf1
    June 15, 2011

    I didn’t get the impression that David thought XMRV was likely to be linked to CFS.

    Does anyone know if we’re going to get a response from Silverman/Singh/Ruscetti/etc to the recombination/contamination stuff? Or are their views largely irrelevant in light of the new data (unless they have new evidence of their own), so no statement would be expected?

  24. #25 Mary
    June 15, 2011

    @ rebecca t #117

    Reno, Nev. – W. Ian Lipkin, M.D will present his recent work Microbe Hunting, at the Whittemore Peterson Institute (WPI) on Friday, June 24, 2011. The presentation, which will review the mechanisms of microbial pathogenesis and routes to proving causation and a staged strategy for surveillance and discovery, will begin at 1:00 p.m. at the WPI at the University of Nevada, Reno Center for Molecular Medicine Auditorium

    In other words..he’s gone to show them how to do it properly…about time someone did….

  25. #26 PatchUp
    June 15, 2011

    gf1- I think your tie-tie disease is messing with your reading comprehension.

    I don’t have a dustbin dx, I don’t appear ‘glowing with health’, but then ten years of undiagnosed Crohns and ACS will do that to anyone. I guarantee that having your brain herniated into your spinal column would buck your ideas up about your bloody Effort Syndrome.

    Even the doctors who gave labels to the dropout bored housewives regret it now. They assumed labelling the disease and pretending it wasn’t mental in origin would help, instead them created a new aspiration for the can’t-be-arsed crowd. Sorry, I mean ‘poor sad fibro patients’.

  26. #27 brad
    June 16, 2011

    so you guys think the lo/alter paper and the recent one showing MLV-like gag sequences in a NY CFS cohort…are both totally wrong?

  27. #28 RRM
    June 16, 2011

    I (am not a retrovirologist BTW but I) think they’re both indeed totally wrong.

    Yes, I’m open to the possibility that I’m wrong, but at this moment I would bet the farm on these results not holding up in retesting. Lo’s retesting results of some of his own and some of WPI’s patients are due for release soon BTW.

  28. #29 Mary
    June 16, 2011

    @ brad….I believe that any paper that concludes they found xmrv in CSF patients..and THIS IS why they are ill…

    are very wrong..

  29. #30 Jack
    June 16, 2011

    http://www.cancer.gov/ncicancerbulletin/061411/page5

    I found the above very interesting, and the video too, from a layperson-patient perspective.

    Incredible how science can work, and how real discoveries are made. Real ‘eureka’ moments!

    I dare say it will be ridiculed and subjected to condemnation – but I couldn’t give a fig!

    NCI and NIH have stated it is a contaminant and that’s enough for me now after all that has passed – Lipkin and BWG or no Lipkin and BWG.

    The investigation is complete. The focus now HAS to be on WPI and Vipdx.

    Let them PROVE their claims. Let patients who ‘tested positive’ and were coerced along with all the rest, now direct their furore at those who have made so much out of this for so long.

    Scientists should always maintain a professional detachment and objectivity. There seems to have been too much emotion involved in all of this from certain quarters – and emotion cannot influence the scientific process.

  30. #31 gf1
    June 16, 2011

    @patchup:

    You did say: “I almost died of a neurological disorder at 21 because I was written off as a somatisater”

    I took that to mean that doctors had looked at you, listened to you, and then presumed your symptoms were the result of somatisation.

    This confusion was probably the result of my tie-tie disease interfering with my reading comprehension.

    Sorry to hear that your brain has gone so wrong.

  31. #32 Andy Vaughan
    June 16, 2011

    Hi. I’m a scientist in Dusty Miller’s lab (grad student until about a month ago, pseudo-post doc now). I don’t have much to add at the moment, other than to say that that early comment about XMRV being fired back in time by ERVseid made my day. I’m a big Morrison fan too :)

  32. #33 Smurfette
    June 17, 2011

    Here’s Lipkin’s paper, Microbe Hunting:
    http://www.cii.columbia.edu/news/documents/MicrobeHunting_MMBR.pdf

    They should like the vignette about discounting the already discounted MMR and autism, and that the first issue addressed for that was temporal relationship….

  33. #34 Jack
    June 18, 2011

    @Andy
    Will be interested to read the paper from Dr Miller published next week (?). It seems to have received some publicity in advance and not all Dr Miller’s attempts at engagement have been – shall we say – ‘welcomed’. Still, water off a duck’s back I am sure.

  34. #35 Jack
    June 19, 2011

    http://vipdx.com/
    Finally relocated? As at 13 June 2011… to…
    http://www.unevx.com/
    Website coming soon…
    Not that I am suggesting anything ‘murky’ here. I understand this is all part and parcel of the planned relocation to the University labs, but how will/does this affect the ‘XMRV et al.’ ‘Test’ and the accompanying claims, ownership, charges, income stream etc.
    What of regulatory approval? How does this ‘testing’ ‘fit’ with the WPI ‘Clinic’ opening – again, finally, apparently, now being touted as happening on August 1 2011:
    http://treatingxmrv.blogspot.com/2011/06/new-beginnings.html
    And what of that ‘Clinic’ anyways? What is it? What will it do? Is it another attempt at wooing the wooable?
    Where is the official announcement? WPI are usually so vocal – and yet now – only a feature (again) on this distasteful Dr’s blog (who is consultant to WPI though based now in Hawaii, and doing very well thank-you on ARVs and the climate!?!)…
    Redlabs to VIPdx to UNEVX to WTF?
    Clinic to no clinic to ‘we haven’t got the money’ to ‘donate more money please’ to ‘It’s opening’ to ‘No it isn’t’ to ‘It’s opening again’ to ‘We can’t tell you anything about it – but isn’t it wonderful!’
    When the heck is someone going to ask some damn questions and get some answers and get protection put in place for vulnerable people?
    This ‘test’ alone puts decent hard-working snakeoil salesmen out of a job – think of their families for a change. Think of how much effort has gone in to promoting this ‘test’ compared to answering the critical questions about it.

  35. #36 The AnaIyst
    June 19, 2011

    Hi. I’m a scientist in Dusty Miller’s lab

    I heard he was trying to recruit patients on forums… Uhhhh? I really don’t know anything about Dusty Miller, but why were you trying to recruit subjects on a forum? It just seems so unscientific.

    Random thought about ERV: I didn’t realize it was you on Dr. Kiwi when I watched it last year.

    http://www.youtube.com/watch?v=nWgbFdKiuVg

  36. #37 RRM
    June 19, 2011

    @The Analyst

    Yes, it seems so “unscientific”. And by repeating it ad nauseum despite Dr. Miller being cleared of any wrongdoing, it might even become true!

    I would agree though that it was probably not the wisest decision that Dr. Miller ever made to engage with a bunch of clearly mentally sick people on the mecfsforums.

  37. #38 The Analyst
    June 19, 2011

    @RRM

    Yes, it seems so “unscientific”. And by repeating it ad nauseum despite Dr. Miller being cleared of any wrongdoing, it might even become true!

    I would agree though that it was probably not the wisest decision that Dr. Miller ever made to engage with a bunch of clearly mentally sick people on the mecfsforums.

    I didn’t realize Miller was cleared of any wrongdoing? What wrongdoing was he cleared of? If you think I frequently browse the mecfsforums, I don’t, so enlighten me.

    However, I have seen the heated threads on mecfsforums where they try to “disprove” everything and anything that doesn’t support their theory.

    Mentally sick? Perhaps. Well, to be fair, I am sure many are physically and mentally sick.

    Can I ask why you engage with these people? I tend to see “RRM” everywhere. I went to the comments of twiv.tv and there were two people that literally trashed with like (400?) comments: You and some CFS patient if my memory is correct.

    This behavior is as strange as those on mecfsforums. Why would someone spend their whole day arguing about XMRV?

    Are you interested in XMRV? Is it fun arguing? Are you hired to do it? The only reason I ask the last question is that it almost looks like a full time job with the amount of comments you can generate.

    No accusations. Just questions. Let me know if I got any facts wrong.

  38. #39 RRM
    June 19, 2011

    If you had read all those silly comments, you’d know why I am interested, because I (partly) explained it there. But no worries, I know nobody actually reads all that tripe. ;-)

    Anyway, to answer your main question: my sister is heavily affected by CFS and I have always been interested in all things pseudoscience and conspiracies. It’s just a bad combination of personal interest and hobby, I guess. I agree I should probably lurk moar, though. But at least it’s keeping me away from obsessively following the birther/911/JFK truth movements. For the time being….

    To answer the other relevant question: some idiot(s) at the forums filed a complaint with Miller’s IRB institution because of the reason you mentioned and Miller was subsequently cleared of any wrongdoing.

    Why exactly would Miller’s actions seem unethical to you?

  39. #40 John
    June 19, 2011

    I still don’t think that any of the ‘clearly mentally ill’ people on any of the various forums I’ve come across about this whole XMRV thing truly have any sort of legitimate mental pathology. Even the ones I would enjoy calling fruitcakes are just wrong, in my opinion.

    I mean, think about it- virtually the entirety of the medical establishment doesn’t even believe that CFS is an organic disease process and basically every single CFS patient in the entire world could probably tell you multiple instances of absolute contempt being displayed towards them by any number of individuals who supposedly should be considered as ‘authority figures’- doctors, judges, nurses, researchers, retrovirology grad students (ahem), the list goes on and on. Yet these are the very same people who all of the sudden are supposed to be trusted? If you constantly kick the shit out of a dog to the point that the dog hates and/or distrusts every person it sees, that doesn’t mean that the dog is suffering from a mental illness.

    I think one of the things that got this whole XMRV thing off on the wrong foot was that two of the first groups to publish negative papers were two groups with literally decades worth of calling CFS patients neurotic malingerers under their belts. One of the individuals in question, Gijs Bleijenberg, has gone on record as stating that the ‘treatment’ offered by his group to ‘cure’ CFS patients consists of patients no longer ‘labelling themselves’ as CFS patients. It’s not just that either, it’s the fact that the above statement was published in the Lancet. So on one hand you’ve got a bunch of individuals who consistantly trash CFS patients with a bunch of pseudoscience bullshit that’s both unproven and, more importantly, unprovable (psychosocial CFS researchers) and a much larger group of individuals who just stand by and don’t do anything to help (the medical establishment at large).

    For instance I would consider myself to be a fairly rational individual yet I still have a considerable amount of skepticism towards vaccines. A lot of people with CFS say they got ill after the Hep B vaccine and one of the few risk factors found for Gulf War Illness that has survived challenge was based simply on the number of vaccines an individual had prior to being deployed. The more vaccines, the higher the risk of developing GWI. If there were trace amounts of proteins, lipids, etc. in the vaccine and adjuvants were also in the vaccine, why couldn’t a vaccine trigger an autoimmune response towards similar compounds in the body? That’s how they induce various disease models in animals, isn’t it?

    Anyways, long story, thanks for reading, still don’t think the XMRV fanatics are mentally ill.

  40. #41 Smurfette
    June 19, 2011

    I heard he was trying to recruit patients on forums… Uhhhh? I really don’t know anything about Dusty Miller, but why were you trying to recruit subjects on a forum? It just seems so unscientific.

    How is that unscientific? Unscientific as opposed to recruiting patients via some other public media? Recruiting doesn’t mean you don’t screen the patients for the study requirements. How come it’s not unscientific when WPI recruits patients over various forums? How come all of the studies listed here aren’t unscientific?

    http://forums.phoenixrising.me/forumdisplay.php?24-Active-Clinical-Studies
    “Post information about clinical research projects currently seeking patient participants.”

  41. #42 Smurfette
    June 19, 2011

    For a laugh, read Dusty Miller’s last response to this blogger:
    http://www.cfscentral.com/2011/06/dusty-miller-redux.html

    Dusty is no match for Mindy’s 9th grade education.

  42. #43 TheAnaIyst
    June 20, 2011

    How is that unscientific? Unscientific as opposed to recruiting patients via some other public media? Recruiting doesn’t mean you don’t screen the patients for the study requirements. How come it’s not unscientific when WPI recruits patients over various forums? How come all of the studies listed here aren’t unscientific?

    I don’t think it was so much what he did. It was the methods he used to try to do it.

    I’m not going to get into scientist bashing, as I don’t know the full story. What I do know though is that he lashes out at the patient community as apparent on CFS Central blog.

    I understand humans aren’t perfect, but he seems to repeatedly do this, and then apologize for his behavior a couple posts later.

    It just seems odd, which leaves me with a question: Is it really Dusty Miller, or an impersonator? I just can’t believe an accomplished scientist would act in such a manner.

    I know the patient community eggs him on, but they are purposely trying to get a reaction out of him. He puts himself at a lower level by lashing out on a public forum.

    And since he resorts to name-calling as well, do you think he has a chance in gaining any respect from the patient community? It’s apparent that they think he is a joke of a scientist – down to the level of “scientists” like Myra McClure or Simon Wessely.

    There are a couple researchers that interact with the patient community, but they act like one as well.

  43. #44 RRM
    June 20, 2011

    Thing is, you already started with bashing the scientist. Why then seemed the “methods he used” so “unscientific” to you? Please explain.

    What I saw on the forums was someone with an actual good plan to bypass all the supposed “cohort problems” (but got subsequently attacked without any sane reason). You do know that the only reason that Ian Lipkin is “recruiting” 150 CFS patients through five (or six) different CFS specialists is that Mikovits kept insisting up to the Singh study that cohort selection was such an important reason for these discrepant results?

    Also Miller is not lashing out at the patient community. He is trying to help them with investigating XMRV and I think he is actually being nice and patient with everybody that really is just asking questions. He lashes out to a few idiot conspiracy thinkers (which happen to be CFS patients) that are routinely calling him a liar for no apparent reason and which are using his frustration with said idiots to turn the community against him.

    If you don’t believe a professional scientist can act in such a matter, I take it you don’t think too hightly of Judy Mikovits? And while I can understand Wessely, why the low regard for prof. McClure? You don’t think she is a scientist because you didn’t happen to like her results?

  44. #45 Anonymouse
    June 20, 2011

    Do you have ANY idea how hard it is, TheAnalyst, to be one of the researchers involved in this work, see it trashed left right and centre by people who don’t have the faintest idea how science works, see yourself called a “pseudoscientist”, “corrupt”, in the pay of BigPharma, and just generally be accused of being evil, when all you are doing is try to help (because, oddly enough, researchers also have friends or family members with ME/CFS and we don’t like watching them suffer either)… and to then be the calmest, most neutral, most patient person on the planet in response to this? The reason most researchers aren’t engaging is because normal people (ie those lacking saint-like qualities) can’t keep their heads in the face of that much shit. Some of those involved have received death threats!

  45. #46 therealanonymouse
    June 20, 2011

    @TheAnalyst — why don’t you stop the bullshit. It is patently clear you are one of the cabal from the mecfsforums so stop pretending you rarely go there.

    If I were Dusty Miller, I would sue Patricia Carter for libel since it is her forum spreading all the lies and crap about Miller. I think he has been well restrained with these crazy people. Who says a scientist has to act a certain way, they shit like everybody else, you know. Does the way anybody behaves on a forum actually reflect the work they do in a lab — oh puleez. This is just another very pathetic and moronic attempt by the lunatic fringe to take the focus off the real issue — XMRV.

    AS far as how Dusty Miller tried to recruit patients on the mecfsforums — he sent people PM’s — what is so bad about that. People advertise on that forum how they are XMRV positive, so why not inquire whether or not a person is interested in potentially giving a sample for a study. They had an 80 page thread going on and on about how the study was going to be negative and people were told not to participate and then to top it all off, that monumental ASSHOLE Gerwyn complained to the Hutch to try to stop the study. And, these same people are now wanting to complain to the journal of virolgy that his study is going to be published in about his subject recruitment. They will do anything and everything to try to discredit researchers because the don’t want to see negative studies published because it allows them to remain in their bubble of denial. Now, if Judy Mikovits emailed members on that forum and asked them for a sample, do you think for one moment that anybody would complain, no they would all be jumping up and down applauding Judy. The people on that forum have libelled Dusty Miller to the point where they are ruining his reputation with all sorts of lies and innuendo. And it’s not just Dusty Miller, it’s a whole lot of researchers who have been trashed just because they have results that these people don’t want to see. They already have an 8 page diatribe about Dust Miller and his newest study, trashing it and Miller, funny thing is, it hasn’t been published yet.

    The people on the mecfsforums are extremists and mostly an embarassment to many ME/CFS patients. mecfsforum members spend a ton of time roaming the internet using many different names disparaging any bloggers, researchers etc who don’t agree that XMRV causes ME/CFS. They contact researchers with death threats and other equally horrible emails. They attack constantly because apparently they are fighting a war. It is my hope that they can just accept that XMRV has been a huge waste of time. They are all excited that the WPI clinic will be open soon with a family doctor and endocrinologist — say what, where’s a doctor that specializes in viral infections??????????????? Seems a bit strange that, well bizarre.

    Looking forward to reading Dusty’s study. Looking forward to reading ERV’s next blog.

  46. #47 ERV
    June 20, 2011

    therealanonymouse– …a family doctor…

    Ah, no. Chitra Bhakta is a DAN! practitioner (more info on DAN!) and apparently a Chronic Lyme True believer (more info on ‘Chronic Lyme’).

    She is a wooer, not a family doctor.

  47. #48 Jack
    June 20, 2011

    Hmm… a fair number of DANs I would like to see hauled before the courts too, and a good point about the ‘New Clinic’ – opening August 1 now I understand.

    If the thang gets off the ground this time. If anyone knows what the heck it is going to do – except perhaps ‘clinical trials’ [rolls eyes]. If someone is ever going to announce anything – other than that spinner-of-false-belief Dr D-J.

    Don’t you chaps have any laws over there? I dare say this ‘wonderful’ ‘clinic’ will be busy taking blood and doing all sorts of ‘magical’ things – to make people ‘feel’ special.

    BTW anyone heard anything about the VIPDx ‘tests’ lately? I hear they are not in business? Or the business has been transferred to the Uni labs under a new name: unevx? I wonder how ‘improved’ these things will be this time round? I think we are up to well over 100% effective now lol.

    I did try to load the linkies but got foiled by ERVs spammer – unsurprisingly :)

  48. #49 The AnaIyst
    June 20, 2011

    @TheAnalyst — why don’t you stop the bullshit. It is patently clear you are one of the cabal from the mecfsforums so stop pretending you rarely go there.

    Well, you can accuse me all you want, but that’s not true.

    Makes me feel sick just looking at the threads. I don’t associate with those kind of people. Never had an account there. Never posted there. I prefer open-mindedness and not religious beliefs. Though it is hard to find people on the middle of the fence. However, there are forums much better than mecfsforums.

    Anyway, this is silly.

    If you don’t believe a professional scientist can act in such a matter, I take it you don’t think too hightly of Judy Mikovits? And while I can understand Wessely, why the low regard for prof. McClure? You don’t think she is a scientist because you didn’t happen to like her results?

    Yes, as I mentioned before, it bothered me how Dr. Mikovits acted at the State of the Knowledge workshop. Coffin did the same kind of behaviors (which bothered me as well) but without the estrogen effect. Dr. Alter was clearly the voice of reason. What bothered me, is they both insisted their theories were (without a doubt) right from the start. At the time, I found Coffin’s plea to patients offensive due the fact it was clear he couldn’t stick to the scientific method while discussing his work at the conference. And it was embarrassing when Mokovits had a couple of her fits. She would have looked like the stronger scientist if she could have just kept calm.

    It’s surprising the most reasonable person in the room was Dr. Alter – a government scientist.

    So to answer your question: Mikovits actions have bothered me. And so have Coffin. However, I think the retraction request was premature. I’m not sure what the motive was behind that, but they really went over-the-top in my opinion with an editorial expression of concern. Weird indeed.

    I don’t consider McClure a scientist because she can’t write a medical journal without a lot of mistakes and erroneous conclusions (as evident in her latest publication). It’s laughable really. If her medical journal looked and sounded like it was edited by (real) scientists, perhaps I would take her seriously.

    So, no, I don’t consider McClure a real scientist, and I can’t take her publications seriously. You can call me closed minded in the sense that anything with her name on it goes in the trash.

    While I am not a fan of Coffin’s character, he comes out with very convincing arguments and publications. His work was and is necessary for the scientific process to work. So even though I wish he could act more level-headed, I obviously him a real scientist with respectable work.

  49. #50 gf1
    June 20, 2011

    I’ve been impressed by Dusty Miller’s willingness to engage resepectfully with those patients concerned about his work. Even when their concerns were not well founded he seemed understanding and keen to explain himself.

    I’ve only seen one point when he seemed snarky and aggressive, and that was specifically targeted towards one particular patient, who certainly seemed to deserve it.

  50. #51 Jack
    June 20, 2011

    @The Analyst

    You might be interested to hear Prof Racaniello and Lipkin et al speaking recently, in response to an email about Coffin and Mikovits at the SOK Conference.

    It was about 1hr 3minutes in to the transmission – forgive me but it was a while ago I listened.

    Point is that such ‘outbursts’ are not that uncommon – and, far from being a sign of a ‘bad’ scientist, I tend to think it is all par for the course (we just don’t get to see/hear it as much in the absence of Mikovits) – and, no, it appears ‘scientists’ get no ‘communication’ or ‘media’ training lol

    http://www.twiv.tv/2011/06/12/twiv-137-look-what-the-dog-dragged-in/

  51. #52 Ecoclimber
    June 20, 2011

    @TheAnalyst

    In regards to your comments concerning recruiting on the mecfs forums. You have no idea what we were trying to do Your assumptions as well as others are totally wrong. You also don’t have any knowledge as to the nature of the research project. It was not Miller recruiting patients but it was I who was making inquires among the patient community to determine costs factors in regards to a future research project that Miller was considering and which I was interested in.

    We consumed a great deal of time, attempting to convince that particular forum… unsatisfactorily I might add…that our research was not about finding XMRV in patients. We had no intention of reinventing the wheel. Our research was focused on something else. We also had the blessing of Mikovits and the WPI after a round of negotiation which you are not privy too.

    It’s people like yourself making preconceived assumptions without adequate knowledge that has put a chilling affect on funding and on researchers wanting to investigate the cause and to find a cure for ME/CFS.

    It was I who decided that because of such unfair and outrageous accusations and libelous statements being hurled at Dr. Miller, at myself, at my foundation, and at the FHCRC, a prestigious institution within our community, that I decided to pull my funding of the research project. I will not let a few malcontents destroy the reputation of a prominent researcher in the field of retrovirology and an institution which over the years has contributed so significantly to prevent, diagnose and treat cancer, HIV/AIDS and other diseases. Unfortunately, it is the patient population that suffers.

    Yes, it is the real Dr. Miller making those posts.

  52. #53 Jack
    June 21, 2011

    Van Kuppeveld and Van der Meer ‘ XMRV and CFS – the sad end of a story’ Lancet:

    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960899-4/fulltext

    Unfortunately, I can’t access the full text – yet…

  53. #54 Jack
    June 21, 2011

    Thar she blows: http://www.meassociation.org.uk/?p=6673 Full text.

    Of course it ‘had’ to be the Lancet lol. Still Van Kuppeveld deserves to have his say, especially after all the personal accusations and double-dealing lack of professionalism from Knicker-fits.

    Good on ya fella :)

  54. #55 Smurfette
    June 22, 2011

    Ecoclimber -

    Thanks for your comment and clarifying those things. I do have a few questions.

    How and why did you choose mecfsforums for your inquiries? I understand this might not be apparent but even the half-crazy CFS patients don’t go there or bother trying to talk/argue/convince them of anything because they are too crazy. Some of the most prolific there appear to be actually crazy not just the everyday casual use of the word “crazy”.

    Why did it need the blessing of the WPI and Mikovits? We’ve known for 2 years now, from day 1 of the first negative study publication, that they and their supporters are home of “unfair and outrageous accusations and libelous statements.” They do not represent CFS nor the majority of patients.

    Could you have made inquiries at other CFS organizations?

    Yes, it is the patient population of several million worldwide who suffer because of literally about only a dozen crazies on the Internet. Sadly, I think it’s highly likely you wouldn’t have encountered nearly as much of the crazy and pulled funding for your project if you had inquired elsewhere instead of the #1 crazy forum.

  55. #56 Smurfette
    June 22, 2011

    Okay, I just spent some time Googling the history of this issue.

    Ecoclimber said:

    We consumed a great deal of time, attempting to convince that particular forum… unsatisfactorily I might add…that our research was not about finding XMRV in patients. We had no intention of reinventing the wheel. Our research was focused on something else.

    but Dusty Miller said:

    http://www.cfscentral.com/2011/06/dusty-millers-xmrv-study.html?showComment=1308282452932#c3212130102578693168

    This question relates to a clinical trial I was trying to initiate to determine whether XMRV was present in human subjects with CFS. I wanted to see if I could confirm that subjects who had tested XMRV positive were indeed positive.

    Ecoclimber, are you a scientist or doctor?

    Because I am a retrovirologist with limited knowledge of CFS, I linked up with Ecoclimber, who has CFS, to help design the criteria for patient inclusion in the trial.

    I have been in communication with Ecoclimber and Cort to refine the objectives and criteria for our study and to help with recruitment of subjects.

    http://www.facebook.com/notes/xmrv-global-action/response-from-dr-dusty-miller-on-pending-xmrv-study/494784121796

  56. #57 Jack
    June 22, 2011

    Dear ERV,

    Is there anything to get ‘excited’ about in this:

    http://www.ncbi.nlm.nih.gov/nuccore/FR872816.1

    I haven’t a clue what it means, what is does, where it is from, but I know it has nothing to do with that Lombardi paper, or with ‘CFS’ patients.

    Still, in certain quarters it seems to be hailed as the second coming, and I am intrigued.

    Perfectly understand if you take a pass on this though, for if it is important it will undoubtedly be explained elsewhere in due course.

  57. #58 Jack
    June 22, 2011

    Dr Miller’s paper referred to above just got published:

    http://jvi.asm.org/cgi/content/abstract/JVI.05137-11v1

    The left half of XMRV is present in an endogenous retrovirus of NIH/3T3 Swiss mouse cells

    Ramon Mendoza, Andrew E. Vaughan, and A. Dusty Miller

  58. #59 stefano
    July 29, 2011

    who cares about the virus or the source if 80% of those on gcmaf and ampligen are improving?
    i dont have CFS and usng gcmaf to make nagalase to healthy levels and it is really ridiculous to look at the sorce when you can cure/improve the disease on many by this combo

  59. #60 W. Kevin Vicklund
    July 29, 2011

    who cares about the virus or the source if 80% of those on gcmaf and ampligen are improving?

    [citation needed]

  60. #61 jacqui butterworth
    August 21, 2011

    I FEAR THEY PROTEST TOO MUCH. THEIR RESEARCH AGAINST XMRV WAS DONE SO VERY QUICKLY-MAKES ME THINK THEY WERE AGAINST IT BEING THE ANSWER TO CFS/ME.

  61. #62 Tony Mach
    January 14, 2012

    @patchup
    (Sorry to rewarm this thread with non-retrovirus stuff, but it needs to be said)

    So you repeat the claim from doctors that “somatisation disorders” are a real thing. Do you have evidence for that? Other than the word of authorities?

    When you where diagnosed with a somatisation disorder, why didn’t you accept it? Why didn’t you stick with psychotherapy? Did you think you know more than the doctors who made the diagnose? Or was it that the “somatizing” diagnose simply did not have any basis in reality?

    When you say that you were “written off as a somatisater”, wrongly I presume, why don’t you make the conclusion that some/many/all of those who are diagnosed with a “somatisation disorder” could actually suffer from an organic illness?

    Take a look at the gene expression studies done by Kathleen and Alan Light in patients with CFS and/or Fibromyalgia, and go ahead to propose a mechanism how a psychiatric problem leads to substantial changes in gene expression in with regards to sensing pain and fatigue in muscles, with regards to adreno-receptors, with regards to interleukin-receptors. Tell me how it was evolutionary possible for a mechanism to arise that made it possible that “the mind” derails the functioning of the muscles – arguably one of the evolutionary most important and oldest parts of all animals – to induce pain and fatigue at the level of the muscle in response to an aerobic exercise challenge. (And no, it is not “deconditioning”, the Lights had proper controls to check for that. And no, no genetic defects have been found that would explain these problems.)

    Please explain that.

  62. #63 Tony Mach
    January 14, 2012

    @ERV,145

    In
    and apparently a Chronic Lyme True believer (more info on ‘Chronic Lyme’)

    The link to “more info on ‘Chronic Lyme’” is broken. Did you want to link to this article?

    http://scienceblogs.com/insolence/2010/12/the_chicago_tribune_chronic_lyme_disease.php

  63. #64 Tony Mach
    January 14, 2012

    I find what Ecoclimber says a bit strange. Is he Dr. Miller? Working for him? Or his employer? I’m sorry, but I don’t master the english language enough to understand how he was involved in this, what he was up to and what scientific merit his undertaking had, that he has thrown in the towel in so fast.

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