XMRV and chronic fatigue syndrome: So long, and thanks for all the lulz, Part III

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:
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:
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????



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


More like this

Restricted infection of xenotropic murine leukemia virus-related virus in human lymphoid tissue

Absence of xenotropic murine leukaemia virus-related virus in Danish patients with multiple sclerosis

Heme oxygenase-1 activation inhibits XMRV pathogenesis and carcinogenesis in prostate cancer cells

XMRV replicates preferentially in mucosal sites in vivo: Relevance to XMRV transmission?

A prototype RT-PCR assay for detection of XMRV in multiple human sample types

Immune correlates of XMRV infection (Lombardi, Mikovits, etc)

Prevalence of XMRV in blood donors, HTLV and HIV cohorts

The effects of XMRV gene expression on the mouse prostate

XMRV: usage of receptors and potential co-receptors

Cell line tropism and replication of XMRV

Structure of the xenotropic murine leukaemia virus-related virus matrix protein

Development of XMRV producing B Cell lines from lymphomas from patients
with Chronic Fatigue Syndrome (Ruscetti, Mikovits and others)

Multi-laboratory evaluations of XMRV nucleic acid (BWG report)

Serologic and PCR testing of persons with chronic fatigue syndrome in
the United States shows no association with xenotropic or polytropic
murine leukemia virus-related virus

XMRV infection in human diseases
Otto Erlwein , Mark J Robinson, Steve Kaye, Myra O McClure, Marjorie M
Walker, Anup Patel, Wun-Jae Kim, Mongkol Uiprasertkul, Ganesh
Gopalakrishnan, Takahiro Kimura and Kikkeri Naresh

Murine leukemia viruses (MuLV) and Xenotropic MuLV-related viruses exhibit inter-tropic complex recombination patterns
Mattia CF Prosperi , William M Switzer, Walid Heneine and Marco Salemi

Detection of MLV-like gag sequences in blood samples from a New York state CFS cohort
Maureen R Hanson , Li L Lee, Lin Lin, David E Bell, David Ruppert and David S Bell

Human infection or lab artifact: will the real XMRV please stand up?
Robert H Silverman

By Rebecca T (not verified) on 06 Jun 2011 #permalink

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


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.


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/74/1â/353.full.pdf+html


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).

The propaganda machine is live and well as evidenced by all the negative studies, co-opted media, and scientists that want to leave XMRV behind before proving where it came from. Not to mention retracting a science study without having scientific proof.

O ERV you have really done it this time...

...my day is suddenly much brighter :)

Thanks x

@Mark You will very rarely see a scientist use the word "proof", especially in biology. While it is believed to be impossible for XMRV to time travel back in time from it's creation in the late 1990s, to infect people in the 1980s, there are other possibilities. Perhaps, for example, one of the people working in the lab where the 22Rv1 cell line was generated was infected with XMRV and then this person infected the cell line. Highly unlikely, but not "impossible".

For this, and other reasons as outlined quite nicely by ERV above, millions of dollars of research have already been undertaken in the study of XMRV and/or related viruses. Money (and time and effort) that many people think could have been more productively spent. All of that research has turned up no epidemiology, no serology, and no XMRV, outside of a couple of labs associated with the WPI.

We may not have reached the end of the road yet, but we passed the "dead end" sign a while ago.


I'd like to see Judy issue a press release in response to that post.

I think you just invented Whack-a-Badger-That Brought-a-Mallet-of-His-Own

By Prometheus (not verified) on 03 Jun 2011 #permalink

I can only feel sorry for someone like mark (#1). Anyone who could believe that all those negative XMRV studies were deliberate, conspiratorial efforts of a "propaganda machine" bent on "leaving XMRV behind" has serious issues.

*gives standing ovation*

By Kemanorel (not verified) on 03 Jun 2011 #permalink

erv, do you have links to the studies conducted in Germany and the Netherlands? The German Science Blogs have a conspiracy nut on their hands who claims there have been positive studies in those countries, and I need some facts as ammunition.
I doubt it will do much good because this person seems unwilling or unable to read primary literature, but I want to be able to say I've tried.

By Wookie Monster (not verified) on 03 Jun 2011 #permalink


Wow. Thanks for all of your work here, and the science-based discussions in detail. Great graphics of the sequences using color columns. A picture is worth a thousand words.

I am amazed that I can follow even part of what you are saying, since my science education is ancient. I would have been lost two years ago, but since then have been reading a lot about these subjects you discuss. Its interesting stuff.

Why did they not look at the macaque sperm? I actually asked myself that too when I read the study. I am still waiting to see what Ian Lipkin comes up with. However, if he reports negative, you have done a good bit of the work for him here already. In that case, he should at least send you a bottle of wine.

Ok Mark, you asked, so shocking truth time.

ERVseid using her Antiscience fired XMRV backwards through time, to infect people at the Crisis point in the mid-eighties.

Now Judy Mikovits must outrun the scientific method itself in order to avert the Final Crisis of her XMRV => CFS hypothesis.

... or, it's a contaminant and I've just read too many Grant Morrison comics.

I noticed this comment from Dr Jamie Deckoff-Jones:

"Being wrong isn't the worst thing in the world. Not knowing is. Even John Coffin said it might be another retrovirus."

I might be interpreting it unfairly, but from a few of the most committed believers in CFS/XMRV, I think there's an increasing sense that they know they're hanging on to a comforting belief which is unlikely to be true, but is preferable to acknowledging that we have little more understanding of CFS now than we did three years ago.

I reminds me slightly of the grieving process. I think the Lipkin study will put this to rest for all but a handful of patients, and that this won't turn in to an ongoing Wakefield/MMR thing.

It will be interesting to hear from Singh, Silverman, etc on evidence of XMRV in prostate cancer being just contamination too.

I wonder what would have happened with the PC finding if CFS hadn't come along? McClure was poised to publish another positive PC study before doing her negative CFS study, and then going back to find evidence of contamination in her PC work.

gf1 states: "I might be interpreting it unfairly, but from a few of the most committed believers in CFS/XMRV, I think there's an increasing sense that they know they're hanging on to a comforting belief which is unlikely to be true, but is preferable to acknowledging that we have little more understanding of CFS now than we did three years ago."

Its impossible to generalize acurately about the mindset of CFS patients or anyone with medically unexplained illness. The signal to noise ratio will always skew things to look like extremism comes with the territory.

Speaking only for myself, I had given up on any help at all from the scientific community for a long time before the WSJ published the WPI findings in the prestigious journal Science in 2009. It astounded me, and I got tested at considerable expense right away by VIPdx for XMRV; thankfully negative.

I was very, very relieved to not have this new retrovirus. It meant that I did not have to go back and report to old sex partners, or friends and family members that I was infected. It also meant that I was probably spared from the horrors gammaretrovirally induced cancer - the probable long term consequence of long term XMRV infection according to the WPI at that time. No problem letting that go ;-)

I have continued to follow this story, reading scientific articles and forum/blogs with polar opposite viewpoints. I have personally heard Judy Mikovits speak twice; she is intelligent and seems compassionate and authenically caring about CFS patients. It is that aspect that is probably the hardest for XMRV+ patients to let go.

@Levi and gf1

>It is that aspect that is probably the hardest for XMRV+ patients to let go.

But that's just the thing, though....there are NO XMRV+ patients. All of the testing is bogus, and is picking up contaminants, so NO ONE has to worry about being XMRV+. I wouldn't be grieving, I'd be pissed as hell if I'd spent money for a diagnostic test that told me I was positive for some weird retrovirus, which made me worry about who had infected me or that I'd infected someone close to me, then had that same group suggest I should take toxic antivirals to help "cure" me, only to find out that it was all a load of horseshit. I assume we will start seeing lawsuits soon, if they haven't started already....

Geoff states: "I assume we will start seeing lawsuits soon, if they haven't started already...."

Geoff, all of the negatives you list are relatively small change compared to the abuse and and neglect most CFS patients get from the medical and scientific communities. I am a lawyer, and I am not going to sue anybody. I don't even want my money back because this would fall under the category of an honest mistake(s) in my book.

I do not sue people at every opportunity. That gives the legal community a bad name. If I became ill from a bad batch of vaccine, I would not sue for that either unless there was some provable dishonesty involved. There are lots of people to sue who do bad stuff on purpose without suing scientists. Let the scientific community deal with this IMHO.

ould 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???

You're almost there with the penultimate suggestion. The correct answer is of course "crackers".

effing great post erv...ranks right up there with your "Singh shot ole yeller"

@ gf1.. I agree that it seems that the staunch supporters are few and far between nowadays..but I believe the majority of those diagnosed didn't support them anyway..

I shall miss them if they go away completely..hell, I'm still trying to figure out what their version of the scientific method is... I guess I have been doing it wrong all these years!

"the abuse and and neglect most CFS patients get from the medical and scientific communities."

This, I think, is the biggest problem with defusing the association of CFS with XMRV. The scientific community is a poisoned well to many with CFS (though I don't know enough to have an opinion on the issue). But I'm surprised you'd suggest those negatives are comparatively small change. Being defrauded of money, and being sold dangerous drugs on false premises--drugs we'd never tolerate were it not for the severity of the diseases they target--seems a pretty big deal to me. People have been harmed financially and physically from this.

Again, I don't have much knowledge of the CFS controversy, but (to draw an analogy), whether that was a murder or a bank robbery, I still think the mugging of fake XMRV diagnosis and treatment happening just down the street may be worth prosecuting.

"the abuse and and neglect most CFS patients get from the medical and scientific communities."

How much sweetness and light did the CFS community heap on Erv? Just for being a scientist and calling it as she sees it?

If the CFS community wants CFS to be figured out, they have to work with, help and encourage the scientists with the best science, not just those with the best marketing who tell them whatever they want to hear.

A paper was published by Lo et al 'found' MLV-like viruses in patients with Chronic Fatigue Syndrome. [...] Probably going to end up retracting too

Until I read Richard Jefferys' link in the previous thread, I was unaware that this Lo is the same AIDS-denialist Lo who spent the 90s running around with his hair on fire about mycoplasmas. Thanks to him, it is now an article of faith within the Crankosphere that AIDS is really weaponised mycoplasmata.
Why is he still given any credence?

By herr doktor bimler (not verified) on 03 Jun 2011 #permalink

yeah a few things confusing me....

1- deckoff jones says in this letter, http://www.facebook.com/l.php?u=http%3A%2F%2Ffiles.me.com%2Fjdj88%2Fhok… that 22rv1 has been around for over 20 years??

2- why is Gallo letting the xmrv gang at his HTLV conference tomorrow if XMRV is over? http://htlv2011.regaweb.med.kuleuven.be/sites/default/files/program-201…

3- why is Singh saying XMRV may still be prostate cancer when its contamination??

By Rebecca T (not verified) on 03 Jun 2011 #permalink

and that brit psychiatrist is really crazy!!

Wessely says although he is used to being subject to abuse, other researchers were "absolutely appalled" by their treatment. "This will convince another large group of decent scientists to say: oh no, I would rather go find the gene for homosexuality or do work on images of the prophet Mohammed than do this."

By Rebecca T (not verified) on 03 Jun 2011 #permalink

daedalus2u states:
"If the CFS community wants CFS to be figured out, they have to work with, help and encourage the scientists with the best science, not just those with the best marketing who tell them whatever they want to hear."

Don't get me wrong, my perspective is not about whining. Decades ago I was diagnosed with "Icelandic Disease" by a neurologist who let me know there was no cure or treatment and to just get by as best I could on my own. Period. I had to live with that, and dealt. That was before "CFS" was even around.

That was not the only setback for me. With the "Yuppie Flu" outbreaks in the mid-1980's, all manner of folks with all manner of various medically unexplained illnesses, including ME and "Iceland Disease" were then herded into the large umbrella of "CFS". Then they were handed over to two psychiatrist leaders in charge of funding who had no "people skills", one in the US, one in the UK. They and thier ilk came up with multiple wacky disease criteria that kept morphing and shifting, and still to this day are next to meaningless. The name Chronic Fatigue Syndrome sucks, and is not very descriptive of the illness(es).

I have nothing against mental illness victims either; for instance fMRI's are finding structural damage in Major Depressive Disorder. A severe enough emotional trauma can kill you for sure. It just does not fit for most cases of CFS as far as I can see. It seems more infectious,toxic, or genetic, maybe a combination of them.

Even from the start, the CFS "community" has never been able to get its house in order like MS or Diabetes has, and has been plagued with constant infighting and weirdness. I distanced myself quickly, and would never let "CFS" get into my medical records or seek treatment for it. Hell, there ARE no treatments other than to try to eat right, and take care of yourself as best you can, and try to make it day by day.

My point is again, if you ignore the signal-to-noise ratio and the fact that what you are seeing online in terms of nastiness towards scientists is a small vocal minority, it may seem like all CFS patients are wackos. It not the case.


False premises is when a government funds clinical trials of woo practitioners "neuro-linguistic programming, osteopathy, clinical hypnotherapy and life coaching". Like the UK government's Lightning Process trial. That is a better target for outrage than a mere dud test.

Here is a bit of insight for you:-

The headline is good fodder for the general public. But the sentiment is non-news for anyone with ME/CFS. I do not have CFS but have had to look after my son. His living death started 10 years ago when he was 13 years old on Jun 11, 2001. In the afternoon.

"Dangerous drugs" are nothing in comparison to this. The real question is why leads, however slim the hypothesis, have not led to empirical trials. In 35 years. Not a single large scale trial.

Just small ones. Like the Norwegian cancer clinic study of Rituximab for bedbound patients which is underway. Or Stanford's anti-viral trials.

Levi-- Actually, that was a really funny joke making fun of religious extremists and their insane responses to inane things (ie homosexuality isnt a choice and pictures of Mohamed). Dealing with religious extremists would be a joy compared to dealing with XMRV nutbars.

I also think its funny that this is the WPIs response via Twitter:

WPInstituteâ RT @XMRVdisease: Opinionated British researcher makes disparaging comments about three communities in Nature article. #XMRV #BBC

No, he made disparaging remarks about one community. Nutbars. But I love how the group who accused this British group of fraud, manipulating data, accepting bribes, etc, is now just *so* offended, and are hoping to enlist PC police and Islamic radicals to 'eliminate' this problem for them.

Pathetic pieces of shit.

Mikovits isnt the only one who deserves this whole ordeal going down in flames. That whole shit farm deserves it.

@ levi and Rebecca... I get what Wessely is saying and I don't find it homophobic or anti-muslim as some are suggesting... What happens when you draw the prophet? Well, a certain portion of the muslim community might come after you..not in a good way..

What happens if you publish a negative study about xmrv in me/cfs population? Well, a certain portion of the me/cfs community WILL come after you..!

As I said in a previous thread...I realize that those spouting the WPI line of "not a true replication study".."In Judy we trust" are a small faction of the me/cfs community and that the majority do not agree. I am glad that the you guys come here and take in a different perspective that what is on the forums..

I am part of the MS community, and I'm not speaking on anyone's behalf, nor do I have any data to base my opinion on, however..alot of us do not focus on the cause of MS anymore...we support any and all research (except the woo crap)..Maybe that is why the MS community seems to have their house in order (as you suggest)..the latest MS cause/cure theory seems to be going the way of xmrv...and most of us are saying: "alrighty then...let's move on"..

You do it to yourself, you do, that's what really hurts. You do it to yourself, just you, you and no-one else, you do it to yourself...

Radiohead there, singing about CFS* whackjobs who scream "I'M NOT MENTAL! FUCK YOUR TREATMENTS!", spend thousands on woo scams like the Lightning Process, buy indian generic ARVs online, and cry "Woe is me, I wish I had cancer, or AIDS, or MS -they were written off as psych illnesses toooo" and then complain that nobody takes them seriously.

Oh and then they bring up Sophia Mirza, and wail "They locked her up for having CFS/ME and she DIED OF IT!". Except, y'know, herpetic meningitis will do that to anyone, but ssh, don't mention that her brain and spinal cord were riddled with herpetic lesions, it was the invisible retroviruses what done it guv.

Ableist, paranoid fucks acting as mental as possible to er... prove they're not mental. Claiming there's no psychological component, and then being 'cured' by woo drops and sCAM shams, only to 'relapse' months later when the attention disappears.

Over and over and over again I've seen it. The quiet few who accept that maybe a rest and some psych meds will help, or that they're at least worth a try, eventually rebuild their lives and fade back into normal life. But who wants normal life when you can spend all day online screaming about medical neglect, conspiracy theories centreing on mouse piss, and ranting about how fucking brilliant it must be to have AIDS or cancer?


*they didn't really, but it's incredibly fitting, no?


I WAS going to suggest you put your claws away and read my post a bit more carefully, but now I should probably just duck.

MS is tough. I get what Wessely what saying too and I don't find it homophobic or anti-muslim either because I have read a lot of his patter about CFS patients. He often just has an unfortunate turn of phrase in his comments. But I don't find it funny in context. It seems like a pretty careless statement coming at this time from the most published and powerful man in the realm of CFS. He literally has almost one man control of CFS funding in the UK. It makes me wonder if he limits his resentment only to the CFS "nutbars" as ERV puts it.

The XMRV extremists do not just hound you scientists and researchers. They attack each other just as much. I have been attacked myself by them and threatened too, so I get it. I get it, really.

Not all CFS patients who try to hang in there eventually rebuild their lives and fade back into normal life. Some do, many don't. There are often long term metabolic, cardiac, and other serious health consequences. If one gets the illness, they can not easily expect to just "shake it off".


sorry, meant it to sound like exasperation not claws. I understand your comments and why you made them - no offence meant. It's the background context of seeing hopelessness and life-lost that gives me a different view of "dangerous drugs" or a few hundred bucks.

Tell me, what do you think of "osteopathy, neuro-linguistic programming etc." and the part it should or shouldn't play in medical research?

"Tell me, what do you think of "osteopathy, neuro-linguistic programming etc." and the part it should or shouldn't play in medical research?"

Nothing good. :) And NCCAM should be defunded.

Wow guys some really good comments - thanks.

One thing though - there is no 'community' ok? What you might think of as a 'community' are an unrepresentative minority of extremely desperate patients.

Hell this was 'science' right? It was, like, for real! And yep any anger, frustration - whatever - should be directed at one source - well maybe a couple - that is those who were most responsible for coercion.

No single organisation represents more than 4,000 patients - to my knowledge - and those that do - I know of two - one UK and one US - are 'relatively' objective and have remained largely 'on the fence' as anyone should expect them to, while the 'science' sorts itself out.

I see estimates being quoted by the media - 17 million worldwide - based on what? A sample survey in the US dating back to when? In the UK we have estimates of 250,000. Where's the representation for them? Hell our National Health Service don't even maintain records of patient numbers!

Just a little point I wanted to make :)

Any reference to a 'community' could I suppose refer to the 'internet community', but I suspect you mean the 'internet community of forum based believers'.

Remember Chase Community Giving? Some 9,019 votes for WPI! 9,019 votes - and how many of them were from actual patients? And yet they 'won' $45,000?!

And now there is a similar voting competition underway, and yep WPI are in there too...

Didn't they get a grant for research into Gulf-War Syndrome recently? How's that going to pan-out now?

WPI=XMRV period. They are a one-horse race and that horse just got shot!

@21 (Rebecca),

In that conference you link to, thereâs this presentation title:

Development of XMRV Producing B Cell Lines from Lymphomas from Patients with Chronic Fatigue Syndrome
- Francis Ruscetti

That Nature article had this section, and made me wonder how normal it was for funding to be dependent upon involving those with no expertise in the area? To me, it sounds surprising... but it could be this is commonplace in other field of research. Anyone know? (Mangan's comments on criteria also sounded like what angry CFS patients have been saying for 30 years):

In Britain, the MRC is accepting research proposals for a new programme devoted exclusively to CFS. The goal of the programme is to draw top-notch scientists into the field, says Stephen Holgate, an immunopharmacologist at the University of Southampton School of Medicine, UK. "Part of the difficulty is that we don't have very many good scientists working in the field," he says.

Proposals for the £1.5-million programme, due by 7 June, must include at least one scientist who does not currently work on CFS. "I know it's small fry, but at least it's a start," says Holgate. "We want a fresh view."

@ Patchup: "Over and over and over again I've seen it. The quiet few who accept that maybe a rest and some psych meds will help, or that they're at least worth a try, eventually rebuild their lives and fade back into normal life."

Rest and psych meds don't seem to do well in trials for CFS. I don't think you're the sort to worry about that though.

I've said it before, and I'll say it again. The day I can find definitive proof for any of these ultra-competent and efficient secret cabals running the world, I'll sleep and breathe easier. Knowing that the REAL people in charge knew what the fuck they were doing would be so utterly comforting.

But they aren't, they don't exist, (TEARS OF TEH ZADNEZZ!)

Yet Judy wants it both ways. She's fighting an ultra-secret, ultra-smart conspiracy that runs every lab everywhere, no one knows anything about it...BUT SHE DOES! AND HER LABS AREN'T PART OF IT! ONLY JUDY IS SMARTER THAN TEH NEW WERLD ORDURRR!!!

Why is it people think that a cabal that can be found out and outed like that is anything to fear? Shit, if they're that easy to find, they're just incompetent, no need to worry.

Hey ERV,
Great post!! Loved the series and this one is a slam dunk.

@Rebecca T
1. Jamie-Deckoff Jones is wrong as usual. The 22Rv1 cell line was generated in 1999...you can verify this by doing a simple PubMed search. It will take you 30 seconds, but I guess thats too much to ask of Jamie...and the facts might get in the way of her theories.
2. About the HTLV I meeting, these conferences are planned months in advance, and the two papers in Science and the call for retraction came out last week.
3. Singh's position is logically untenable.

By Truthcourageco… (not verified) on 04 Jun 2011 #permalink

Sorry gf1, I've seen it work. I've seen people who claim they have CFS/ME/fibro/MCS recover overnight after encountering some 'miraculous' new therapy. The magic cure is as contagious as the idea of somatisation disorders themselves.

Disease, real disease, does not discriminate. Measles doesn't care what colour your skin is, which continent you reside on, what your age or education level is. Nobody in the somatisation denial camp has ever been able to explain to me why these dustbin diagnoses, these alleged 'neuroimmune' (lol) diseases mainly affect western white women over the age of 18. There are exceptions of course, but the vast majority are reasonably well-educated, 18-50 year old white women. Why? Contagious diseases just don't act like that. There are very few areas of the world not accessible by air, so why aren't Somalians lying in bed and whining about how they wish they had cancer? Why aren't Masai, or Inuit, or Amazon tribes 'afflicted' with these disorders? Why is there a frighteningly exact correlation with the groups most likely to suffer depression?

This phenomenon has been around for aeons. Glove paralysis, neurasthenia etc. Always the same type of person affected. Why?

It angers me that my health service is pissing away money on woo and on coddling people who need to accept they have a mental illness. It angers me that the benefit system is bogged down by you people so much that claims by anyone else take 4 months. I'm sick of internet resources for the disabled and chronically ill being overrun by thousands of somatisers, while those with cancer, or lupus or MS or whatever are drowned out and give up. It sickens me that as a 30 year old white woman, no doctor will take my health issues seriously, because they're so fucking jaded that they think anyone complaining of certain symptoms is yet another person who is suffering from somatised pain and refuses to accept it, rather than from an actual autoimmune or neurological disorder.

Nobody's denying any of you are having symptoms, just annoyed that you won't accept the origins because "I'm not mental". Because you're ableist, and dismissive of those with mental illnesses.

But whatever, do what you want to yourselves, just shut up about it. Stop saying how easy and brilliant cancer is, or AIDS.

levi not all researchers working on CFS have labs with funding and clinics with subjects to do tests on, or the people skills or charisma to acquire those things.

I'm not a scientist but I've spent most of my adult life working in jobs that could loosly be called "law enforcement". So I like a good detective story and ERV you've put one together here. I've been sick for a long time now, after getting an infection my doctor said was probably adenovirus. Just in case though, in early 2010 I paid my money for the VIP clinic to test for XMRV. After a long wait I got back a test result that sounded about as much like the runaround as anything. One of the tests was positive and one was negative, but the negative didn't really mean negative, it just meant their test didn't find it but I could get retested again in 6 months when the test methods improved. Oh and by the way, if I was on antiviral drugs, the results might not be reliable. Now, it didn't take years of working for big companies in their fraud departments to spot a Ponzi scheme like VIP was pulling off. The whole thing just stinks and ERV, you seem to be the only one willing to call it that way.

The other thing I've noticed is that all these people who want to keep XMRV hope alive talk about how nobody but WPI uses "clinically validated positives" for their studes. I have no idea what that is supposed to mean but I've noticed that if you replace "clinically validated positives" with the word "contamination" they finally start to make sense. It's a fun game to try. If I wasn't alcohol-intolerent, I'd probably take a shot of Jack every time I red it to make it even more fun.

I like those pictures of the virus sequences you put up there. I was waiting for a prescription at the drug store the other day near one of those 1-hour photo printers. The tech was printing off picture after picture - family groups, babies, beach pictures. Then all of the sudden one picture of two little kids posed on a swingset just kept printing off. Dozens of copies. When I looked at your little dots up there, I thought about that. Guess the VP62 just got caught in their PCR machine. Judy doesn't even know it (or more likely doesnât want to know it.) She thinks she's got a whole roll of film of family pictures being printed and instead it's just the same pose over and over again. Her family album of XMRV is filled up with clones.

Last thing. Those Chase Giving contests. I thought maybe the banks would avoid a scandal and take the prize money away if the news got around but now I kind of doubt it now. They're gettin' more free publicity than they could have hoped for. That poor little poster girl (http://nopostergirl.com/) whose tryin' to take them down for voting scandals is sort of pathetic, although from a professional standpoint I gotta admire her gusto. The efforts shes put into uncovering the scam make me wonder why she cant hold down some kind of job. Too bad she isn't concerned about the real scam.

Thanks ERV for this fact-finding, case-closed tale of the XMRV mystery. Wasn't much of a mystery to me but I will be waiting to see if justice gets served to the people who hijacked hope and millions of dollars for the past 2 years.
Later, Deano

By Adeeno Viruss (not verified) on 04 Jun 2011 #permalink

I was just gettin ready to shut down and went back to poster girls site just in case Lois Lane had uncovered any new crimes today. I found this bizarro account of her appointment with "genius" Paul Cheney. Another crime being committed right under her nose. He explains the negative XMRV tests and uses gels and sprays to both provoke and cure her symptoms. Guess that's safer than the stem cells in Panama he was peddlin before the 60 Minutes story broke and XMRV came into fashion. All for about 5 grand per visit last time I checked. http://nopostergirl.com/2011/04/16/the-post-appointment-post/

By Adeeno Viruss (not verified) on 04 Jun 2011 #permalink

Patchup, regardless of what you've seen with your own eyes, you're getting a lot of stuff wrong.

CFS does affect more women than men, although the ratios seem rather variable.

Several studies have now found CFS to be marginally more common amongst lower social/economic groups, although this seems somewhat dependent upon the criteria used.

International comparisons are hard, because CFS is just a dustbin diagnosis, but rates of 'medically unexplained symptoms' have been found to be higher in developing nations than in the West (which is what I'd expect if they were the result of emotional disturbance - the mutually contradictory nature of many of the prejudices that surround CFS is part of the fun).

There was a CDC study a few years ago showing marginally higher rates of CFS in different minority ethnicities than white in the US. Then a recent UK study showing the same rates of CFS in different ethnic groups.

The 'whining rich white women' thing is largely a reflection of people's prejudices, and the fact that Somalian's and others with less power and such problems tend to be easily ignored. Just as your promotion of 'psych meds' for CFS is not supported by the evidence, neither are your claims here. I'm not expecting it to matter to you though.

Are you really complaining about the fact that, as you're a 30 year old white female, doctors unfairly assume you're somatising? And you blame this on the 30 year old female CFS patients who you assume are somatising?

@ Adeeno 41 - great comment.

@ Adeeno 45 - is this lady for real?! Is Cheney?! I was going to quote - but bollocks to that: no more BS needed.

Suffice it to say that McGuff :) is for cancer. Is this just another 'hunch' that it will also be effective - in the absence EVEN any re-test lol for 'XMRV' - against 'something' that 'might' have a role to play in 'CFS'?

Or is this 'let's see if it works and who cares if it might be dangerous' methodology actually backed by scientific research and clinical trials?

You are a self-declared person with a 'loose' connection to 'law-enforcement' over the years, what do you think 'Poster-girl' has done for Cheney in posting these sort of comments?

Erv has made a couple of logical errors here....she will ignore this and just rant at me but a few people may take note, the usual exho chamber crew will just swear and bitch.

but she consistantly uses HIV as a comparison to back up arguements, but there is no reason to beleive XMRV would behave like HIV. Even people involved with XMRV have stated if you had to compare it to anything HTLV would be a far better choice as it doesnt behave in the rapid mutating way that HIV does.

And the most glaring error in ERvs thought process is she places a huge emphasis on XMRV NOT being found in HIV patients. Of course HIV patients are riddled with virus and infections, this is obvious, but to say that becuase they dont have XRMV is significant is laughable.

We are talking about retrovirus here not being sneezed on by a guy on the bus and catching a common cold, or an enterovirus or something easily caught. For someone to have caught XRMV AND HIV would have to be extremely unlucky, where are the rates of people infected with HIV AND HTLV????? come on erv lets hear.....do HIV patients often have HTLV? that being the other retrovirus option....

The jury is out how XRMV may or may not be caught but as its a retrovirus its unlikely to be caught easily like EBV etc so why on earth would HIV people likely have it in high rates...makes NO sense.

Ohh that's right James...

XMRV is a retrovirus so you should catch it like..how?

Sex? Needle sharing? Mother to child?

What mode of infection explains the distribution? Apart from time travelling of course.

By mike150160 (not verified) on 04 Jun 2011 #permalink


If XMRV were a real human-infecting, productively replicating retrovirus,, there would be much more variation in the samples supposedly acquired from people. HTLV may not have as high a mutation rate as HIV but even HTLV would have greater variants in the wild than 2 (or was it 3) base pair differences. The jury is not still out. The sum of the evidence strongly (to the point of near certainty) points to XMRV being nothing more than a contaminant. That is all. Yes, it sucks that there is no known cause of CFS and thus no real promise for treatment as of yet (yes, yes Nitric oxide, blah blah) but that's life. Research goes on and the data is what it is. Nothing more, nothing less.

By Poodle Stomper (not verified) on 04 Jun 2011 #permalink

We are talking about retrovirus here not being sneezed on by a guy on the bus and catching a common cold, or an enterovirus or something easily caught.

But Mikovits et al. are saying that XMRV is easily transmitted, the way it turns up in every subject in every clinical population they examine.

By herr doktor bimler (not verified) on 04 Jun 2011 #permalink

I am only a 'lay-person' and have a limited science backgroung so can understand most of what you say in your article. I was recently diagnosed with fibromyalgia and have been following this research closely but my mind is not as yet made up. What does confuse me though, is this: if XMRV does not cause CFS and does not exist in humans, why does the bloood bank in Australia and other countries not allow donations from sufferers?


I could be wrong but it seems to me to have been a knee-jerk reaction to make sure that if it DID, that we wouldn't have a repeat of the early days of HIV where it spread to some through blood-related products.

By Poodle Stomper (not verified) on 04 Jun 2011 #permalink

The main reason was a precaution in case the retroviral cause was confirmed. A secondary thought was expressed by some (eg. Dr Alter) - it is likely that one or more pathogens are involved even if we can't identify them yet. Therefore the same precautionary principle applies.

The blood bank is just doing their job in being careful - just in case. As you know it's a bit of a moot point - CFS patients are not so silly as to donate blood.

Peter (Melbourne)

If the Australian blood service is anything like the New Zealand counterpart, they received such a bollocking a few decades ago for not acting quickly enough to screen donations for Hep C virus that they are scared shitless of making the same mistake again.

Then some now-discredited researchers, on the basis of their now-discredited research, hoping for more customers for their virus-testing business, issued a few press releases about the terrible XMRV epidemic looming up. So the Australian blood service, seeing the potential for hostile headlines if they ignored the warning, reacted by slamming the door on their CFS donors. The NZ blood service didn't even bother looking at the research to justify barring CFS donors, but simply announced that they would follow "international best practice", because no-one ever lost their job for a stupid decision if enough other people were making the same stupid decision at the same time.

In NZ this did not make a big direct impact, only affecting a few dozen regular CFS donors (I imagine that for someone with CFS, dragging yourself to the donation centre must require truly heroic determination). The decision has made donation that little bit scarier, though, just enough to turn off a few potential donors who were wavering.

Sadly but predictably, there is no move to rescind the decision and allow CFS donors again now that the very existence of XMRV has been thoroughly debunked, because that would require someone to admit making a mistake.

By herr doktor bimler (not verified) on 04 Jun 2011 #permalink


From WPI Website Q&A What is XMRV?

'XMRV is a human retrovirus and is similar to HIV and HTLV-1..'

I am no 'scientist' either lol but I am sure I read most recently, what with all the hubbub, about a study that did indeed look into HIV patients blood for XMRV and found nothing.

Of course either my dysfunctional memory is failing me - quite possible - or they used the wrong methods in checking that blood... hmmm...

This was posted on another forum. Could somebody please address this. Thanks so much.

"The WPI has put out an XMRV studies comparison chart. Jamie Deckoff-Jones has uploaded this chart at: http://treatingxmrv.blogspot.com/

Page 3, footnote 8 of the XMRV studies comparison charts says:

"Knox et al. performed serology assay using an ELISA method and confirmed one patient using western blot. The one patient was reported to be negative despite clear evidence which showed antibody reactivity to the p30 and p15E viral proteins. ELISA method has arbitrary value as to background values, and, therefore, may miss many positive samples that are only weakly positive. The western blot if used with all patient samples may have produced positive results since the single sample analyzed produced positive bands for two viral proteins."

Not only was this a non-replication study, the fix was in! When Knox et al. found one positive, they called it a negative & changed their testing methods so as to not find more positives! I find that the scientists & Science magazine who published this study are the mean and hateful ones to publish this fixed negative pseudoscience just to try to prevent us XMRV positive from getting treated (by arv's)."

By anonymouse (not verified) on 04 Jun 2011 #permalink


CFS is not the exclusive domain of middle aged white women. http://archpedi.ama-assn.org/cgi/content/abstract/164/9/817

Your explanation of your own difficulty getting medical help is interesting. "...it sickens me that as a 30 year old white woman, no doctor will take my health issues seriously, because they're so f** jaded that they think anyone complaining of certain symptoms is yet another person who is suffering from somatised pain and refuses to accept it"

This is absolutely identical to the archetypal CFS experience :- person is active, athletic, dating, travelling, studying, developing their career, etc. Then in a single day after an outrageously high fever that all stops. Forever. And their doc treats them like you were treated. Your own experience gives you a unique insight into human experience and anger of others.

Also, contrary to what you suggest, most CFS's are keenly aware of their mental state and need for treatment. Rates of using various psychoactive meds and mental therapies as a treatment, or having used them for a time would be 100% or very close to. The same with somatized pain. My observation is that as a group CFSer's are more anti-woo than an average societal sample. Sickness is a new experience for them and they tend to be staunchly mainstream medicine. Of course, a few years of desperation changes perspectives.

Also, functional impact of CFS, cancer etc.

Addendum to 47.

GcMAF I see has amazing results not as a 'cure' for cancer, but also for HIV - O and AIDS - Parkinsons, Hodgkins and more!

I must get me some - 'cause it carries a money back guarantee too!

Wonder if Cheney does? Hmm...


@Rebecca T,


Iâm tempted to write a short generalised post on my blog to explain why (initial) follow-on studies are rarely true replication studies, but then I suspect itâd just be ignored - ?

Perhaps someone would write a post on their own blog reaching a similar conclusion but arriving there along a slightly different methodology.

By herr doktor bimler (not verified) on 04 Jun 2011 #permalink

Allow me to elaborate on my earlier comment (#52), for my reasoning there was a trifle elliptical, a besetting sin.

(1) Mikovits et al. have claimed that XMRV is detectable -- presumably as a cause -- in various clinical groups including but not limited to CFS, prostate cancer and autism.

(2) There is no epidemiology for these groups. There is no risky behaviour placing them at special exposure to a causative agent (other than "getting old" in the case of prostate cancer); no chain of contagion going from Patient 0 to Patient 1 to Patient 2.

(3) We conclude that exposure to XMRV must be widespread, with some additional, unknown conditions (environmental or innate or whatever) to explain why some people succumb to it while others don't. So far this is simple "excluding the impossible while leaving the improbable" reasoning, with the corollary that immunodeficient people should be especially susceptible to XMRV.

But Mikowits et al. have also sounded tocsins and alarums about XMRV in the blood supply 'breaking out' into the wider population and leading to an AIDS-like epidemic -- the implication being that people are *not* exposed to it at present. This contradicts point (3). This is why I've been saying right from the start to anyone who will listen -- undeterred by my ignorance about endoretrovirology -- that Mikowits et al are full of shit.

By herr doktor bimler (not verified) on 05 Jun 2011 #permalink

Well I've been bitching about this forever, but it looks like science decided to look in the throat.

We need an explanation for what these crimson crescents are caused by that doctors and science have been ignoring for decades.

(Now I get shot down by 'doctors' that believe you can't see CFS on an examine of the throat since they aren't trained to look where the discolored areas are. If what I claim were true, everyone would know this already, right?)

By Censored Analyst (not verified) on 05 Jun 2011 #permalink

PeterW - I live in a desperately impoverished part of the UK. I almost died of a neurological disorder at 21 because I was written off as a somatisater, because I fit the demographic. Emergency neurosurgery saved my life, but I was left with brain damage. Six years later, life rebuilt, job with the health service etc I started to get ill again and got the same "it's in your head" runaround. So I tried the antidepressants, counselling etc. Five years later, now unable to walk, I saved up my benefits for a referral to a private doc. Several hundred quid later I'm brushed off with another somatisation disorder. Only a chance blood test revealed the real cause, and now it's too late. Damage is done.

So yep, I do know how hard it is to fight, but there was nothing I did not try. I didn't throw my hands up and scream "I'm not a nutter!" or indulge in weird conspiracy theories. Doctors have told me themselves that they are sorry they jump to me/cfs/fibro, because they see it every day. They see the work avoiders, the stressed housewives, those unable to cope in the real world GLOWING WITH HEALTH and yet claiming their illness is worse than cancer.

So sorry, I have no pity for those who refuse to even try psych meds or therapy. I have no pity for those who use the fact that these 'diseases' have no physical signs to claim them as their own (don't deny they exist, they do). Like I've said I do not doubt people feel ill and tired, but if they refuse to even try psych therapies due to internalised ableism, they can get stuffed.

Oh and to the sub-literate who said I claimed cfs/me/fibro/mcs was the exclusive domain of white women, learn to read. The biggest sub group are STILL white women. I did not say exclusive, but do not tell me somalians aren't coming forward due to lack of agency. That's not how science or medicine works.

@ 58..Deckoff Jones sounds like a 2 year old, whining in the corner....ooooohhhhh science is mean to me.. To answer your question about the positive result... here is a quote from the authors, direct from the paper.. tho not sure if this is the 1 positive patient jerkoff dones is talking about

One of the 60 samples was
weakly reactive in the gp70 CMIA with a sample/cutoff
(S/CO) value of 5.4 (Log N of S/CO = 1.68).
However, the plasma was not positive by Western blot
(WB) assay using purified XMRV viral lysate as well
as recombinant gp70 protein (22) (Fig.2B). It was
therefore considered negative


Please re-read your post #42. You had said lots of stuff like: "There are exceptions of course, but the vast majority are reasonably well-educated, 18-50 year old white women."

This is just a reflection of old prejudices, not good evidence. Population based studies looking at CFS prevalence in the UK and US have found similar or higher rates of CFS amongst lower social and economic groups, and minority ethnicities, than well educated white women. CFS is just a dustbin diagnosis, so there's not much we can say confidently about it, but what evidence we do have seems to contradict your assertions.

You said: "They see the work avoiders, the stressed housewives, those unable to cope in the real world GLOWING WITH HEALTH and yet claiming their illness is worse than cancer."

They saw that in YOU patchup! If they were wrong there, maybe that indicates that this is not a safe way to diagnose psychiatric illness?

@ herr doktor bimler:

You're right. I hadn't thought of that. XMRV only made sense for CFS if it was already fairly widespread in the population... hmm... I guess you still wouldn't want it being passed on through blood donation though.

@66 Thank you Mary.

It's unbelievable that certain people want this study retracted due to this one weak positive -- mind boggling. They have accused Knox of changing the parameters of the testing, to make all the samples appear negative. If Knox et al. were guilty of purposefully trying to fudge the results, then they wouldn't have mentioned this weak positive at all.

By anonymouse (not verified) on 05 Jun 2011 #permalink

anonymouse-- When I do ELISAs, I always have a control quantity of protein/virus. For example, here is the manual for the p24 (HIV-1 gag) ELISA I use. Look at 'Test Procedure' step #2-- its all about how to make your curves.

Fundamentally, yes, the numbers you get out of this assay are arbitrary. 10,000 RLU or whatever dont 'mean' anything. But when you compare that number to your standards and to your mock wells, you can figure out which samples have the protein you are looking for, and if so, how much. If all of your samples are at 10,000 RLU, and all your mocks are at 10,000 RLU, and the last well in your standard is 25,000 RLU, then you can say that none of your samples had the protein of interest, even though '10,000 RLU' is 'arbitrary'.

Everyone who does this assay knows this. Thats how ELISAs work.

Which is why that 'rebuttal' Mikovits wrote was not directed towards scientists. Though she has displayed insane behavior in the past, I believe that letter is an official announcement of her status as a debutante pseudoscientist.

I would go a step further than suggesting the letter was not directed towards scientists. It seemed to me that she got some of her ideas FROM Prof. Gerwyn and his research group.

Yes, it seems some of the members of that forum are in cahoots with Mikovits/WPI, which would certainly explain a lot of those irrational forum posts....

@69 ERV -- thanks for the explanation, makes total sense to me.

I have just been reading some of Dr. Jamie Deckoff-Jones blogs. I can tell you if a doctor I was seeing in person was spouting all this crap, I would probably ask the medical board to review her sanity and the fact that she influences patients with pseudoscience and non-science and lodge a formal complaint. I think I will be taking a look at the Nevada Medical Board re: ethical practice. Each state has different professional standards and I think her blogs definitely demonstrate a distinct lack of professionalism and lack of ethics.

If it weren't for Professor Gerwyn and his band of merry woosters, Mikovits wouldn't have a lot of support. If I were a researcher, I would be embarassed to have my only support comprised of a bunch of fringe lunatics. Has she hired Andrew Wakefield yet?

By anonymouse (not verified) on 05 Jun 2011 #permalink

anonymouse - She is licensed in Hawaii not Nevada.

By Smurfette (not verified) on 05 Jun 2011 #permalink

@73 Smurfette -- I found a license for her in New Mexico, not Hawaii. Is she not the medical director of the WPI -- I don't live in the USA so know little about licensing -- does she not have to be licensed in the state she is practicing in. I will look at what New Mexico has to say about professional standards and ethics.

By anonymouse (not verified) on 05 Jun 2011 #permalink

Anyone listened to Prof. Racaniello's TWiV broadcast?

Stephen Goff and Rich Condit - XMRV and the recent events: http://www.twiv.tv/

hahaha Erv you are quite funny and sweet how you hate to be picked up on things... your blog states "ohh but they didnt find it in HIV"....well they have.

By virologystudent (not verified) on 06 Jun 2011 #permalink

herr doktor bimler-- Well, I would phrase it more like "Of the many ways you can get a false positive XMRV Western Blot, cross-reactive antibodies to HTLV is one."



By herr doktor bimler (not verified) on 06 Jun 2011 #permalink

No HIV-1 infected specimens were reactive.

Without getting so emo like Mikovits, what is your best guess why No HIV-1 infected speciments were reactive? It couldn't be that the that some may have been infected, and the antiretrovirals made XMRV undetectable, could it?

All contamination? I guess humans are contaminated too?

Without making claims of disease, is it fair to say that some people may really be infected? Or does Abbott have it all wrong too? John Hacket Jr had a pretty impressive presentation at CROI, no? Weren't you there?

By Censored Analyst (not verified) on 06 Jun 2011 #permalink


If you don't want to honestly answer a simple question, it's easier to just make fun of the question.

I know what you would have (honestly) answered anyway, but I'm sure very simple logic can be hard for the super-advanced virologists.

By Censored Analyst (not verified) on 06 Jun 2011 #permalink

I love the video - it had me roaring with laughter!

"looks like they have found xmrv in HIV cohorts...guess a lot of your HIV arguements re xmrv are flawed...as suspected by others.

That's the problem with most of the self-proclaimed specialists on XMRV nowadays, reading just the title of a paper or even a yellow press article qualifies for comments on the subject...

And FYI, while I think your most of your original arguments are valid, however I believe you are purposely avoiding my questions, so I'll add some clarity.

Of US donors, 0.8% (8/1000) were CMIA reactive: 1 p15E and 3 of 7 gp70 reactive samples WB confirmed yielding a 0.4% seroreactive rate.

So do you think it is possible that humans are "contaminated" as well?

No HIV-1 infected specimens were reactive.

Could this be because the people with HIV-1 may have been on antiretrovirals that made XMRV undetectable?

Cells migrating out the tissue and tissue cells were positive for XMRV and both AZT and Raltegravir blocked
the detection of viral DNA.


It seems that such an idea is possible, no?

XMRV seroprevalence ranged from 0 - 0.6% in US blood donors, HIV-1 infected and HTLV uninfected subjects.

I'll leave out the HTLV info because of questions of cross-reacting antibodies.

Leaving disease associations aside, do you think it is possible that XMRV is not a contaminant and is circulating throughout the human population?

It appears that you don't want to answer this question?

By Censored Analyst (not verified) on 06 Jun 2011 #permalink

@ CA #90

I know you didn't direct the question to me and I am not a virologist (labrat, yes)..but I don't believe xmrv is circulating..this is science and that could be proven very wrong but up till now... and I'm going to direct you to the TWIV podcast (linked earlier) where they say: (paraphrasing) If xmrv is out there, most labs would be able to find it. It wouldn't take a super, secret, magic sparkling test used by JM to find it.

Like erv, they discuss the Coffin paper which is devestating to the pro xmrv argument.

In the end, they say that most pro xmrv arguments are RED HERRINGS and perhaps Lipkin is continuing his study because those findings could possibly bring in the FDA and regulate JM's magic lab.

I believe you are purposely avoiding my questions...

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.

You could always check out what Tufts have said, personally - as a non-scientist or pretend one - I found it a good review of the 'XMRV' story thus far...

But it might prove too - how shall I say - basic for some here (though not all I suspect):


I never mentioned Judy Mikovits or her magic lab.

I was referring to a paper by the people of Abbott who have been involved in many XMRV studies (both positive and negative).

I'm sure you can figure it out, Ace.

I wouldn't say I figured it out, but from the evidence it does look like it may be circulating the human population. However, from the evidence, it does not look like it is associated with CFS.

Ignoratio elenchi.

By Censored Analyst (not verified) on 07 Jun 2011 #permalink

How is possible that VIP Dx has been "acquired" -- Daddy Warbucks Whittemore owns VIP Dx and owns UNEVX plus it's his institute. Oh he probably owns Nevada too.

I wonder how long the University of Nevada will support their research or perhaps Harvey has given them so much of his filthy luker that they will support anything the WPI does, including treating XMRV infection with their own newly branded treatments (which I am sure is what's coming next.

By anonymouse (not verified) on 07 Jun 2011 #permalink

ERV, I have a genuine, want-to-know-more question...
People still keep referring to XMRV as a virus. Given that it is a result of recombination in the lab, does not appear to be able to infect any cells, and the production of virus particles is questionable, does it deserve that definition? Or is it just some DNA with virus-like properties? What is the definition of a virus anyway?

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.

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 :)

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.

By The AnaIyst (not verified) on 07 Jun 2011 #permalink

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 (MLV001âMLV006; HQ601957â62) 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!-

@ 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.

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

@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?

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.

"For example, is ERVâs attitude normal? (i.e. ERVâs reasonably fiery insults towards WPI and its staff on her blog.)"

Posted recently on Ranciello's blog by MeToo

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

By Unperturbted (not verified) on 11 Jun 2011 #permalink

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.

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!

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 âwildâ where âfree-rangeâ scientists post.

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


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:


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...

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.



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...

@ 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.

By anonymouse (not verified) on 15 Jun 2011 #permalink

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.

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?

@ rebecca t #117

Reno, Nev. â 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....

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'.

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?

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.

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

are very wrong..


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.


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.

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 :)

By Andy Vaughan (not verified) on 16 Jun 2011 #permalink

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.

Finally relocated? As at 13 June 2011... to...
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:
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.

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.


By The AnaIyst (not verified) on 18 Jun 2011 #permalink

@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.


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.

By The Analyst (not verified) on 19 Jun 2011 #permalink

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?

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.

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?

"Post information about clinical research projects currently seeking patient participants."

By Smurfette (not verified) on 19 Jun 2011 #permalink

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.

By TheAnaIyst (not verified) on 19 Jun 2011 #permalink

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?

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!

By Anonymouse (not verified) on 19 Jun 2011 #permalink

@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.

By therealanonymouse (not verified) on 20 Jun 2011 #permalink

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 :)

@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.

By The AnaIyst (not verified) on 20 Jun 2011 #permalink

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.

@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



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.

By Ecoclimber (not verified) on 20 Jun 2011 #permalink

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 :)

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.

By Smurfette (not verified) on 22 Jun 2011 #permalink

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:


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.


By Smurfette (not verified) on 22 Jun 2011 #permalink

Dear ERV,

Is there anything to get 'excited' about in this:


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.

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

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

[citation needed]


By jacqui butterworth (not verified) on 21 Aug 2011 #permalink

(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 â arguably one of the evolutionary most important and oldest parts of all animals â 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.

By Tony Mach (not verified) on 13 Jan 2012 #permalink

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.

By Tony Mach (not verified) on 14 Jan 2012 #permalink