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

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

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


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

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

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

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

* Minimum, I am sure I missed some

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

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

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

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

It is not.

* Minimum, I am sure I missed some

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

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

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

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

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

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

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

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

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

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

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

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

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

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

-RNA extracted directly from plasma

-Total nucleic acid extracted from PBMC and RT step performed

WB testing has not been completed (error discovered)

PBMC results:

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

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

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

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

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

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

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

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

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

Sometimes researchers can find XMRV.

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

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

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

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

Minor problem: No one can replicate those findings either.

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

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

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

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

XMRV, ERVs, whatevs. lol.

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

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

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

Thats just what weve found so far.

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

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

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

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

Fine! Where is the evidence?

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

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

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

*blink*

*deepbreath*

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

Comments

  1. #1 mark
    June 3, 2011

    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.

  2. #2 Jack
    June 3, 2011

    O ERV you have really done it this time…

    …my day is suddenly much brighter :)

    Thanks x

  3. #3 DrDuke
    June 3, 2011

    @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.

  4. #4 Prometheus
    June 3, 2011

    Wow.

    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

  5. #5 qetzal
    June 3, 2011

    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.

  6. #6 Kemanorel
    June 3, 2011

    *gives standing ovation*

  7. #7 Wookie Monster
    June 3, 2011

    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.
    Thanks!

  8. #8 levi
    June 3, 2011

    ERV,

    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.

  9. #9 Aj
    June 3, 2011

    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.

  10. #10 gf1
    June 3, 2011

    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.

  11. #11 Rebecca T
    June 3, 2011

    im totally confused, why hasnt this conference been cancelled??

    There seems to be loads of talks on XMRV? and silvermans going ?? (whys he not pulled out then?)

    see… http://htlv2011.regaweb.med.kuleuven.be/sites/default/files/program-20110526.pdf

  12. #12 levi
    June 3, 2011

    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.

  13. #13 Geoff
    June 3, 2011

    @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….

  14. #14 levi
    June 3, 2011

    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.

  15. #15 Sili
    June 3, 2011

    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”.

  16. #16 mary
    June 3, 2011

    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!

  17. #17 jaranath
    June 3, 2011

    “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.

  18. #19 daedalus2u
    June 3, 2011

    “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.

  19. #20 herr doktor bimler
    June 3, 2011

    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?

  20. #21 Rebecca T
    June 3, 2011

    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%2Fhok3p2&h=ca60b 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-20110526.pdf

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

  21. #22 Rebecca T
    June 3, 2011

    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.”

  22. #23 levi
    June 3, 2011

    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.”

    daedalus2u,
    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.

  23. #24 PeterW
    June 3, 2011

    jaranath,

    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:-
    http://www.news.com.au/national/id-rather-have-cancer-says-alex-wilson-glab/story-e6frfkvr-1225761199832

    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.

  24. #25 ERV
    June 3, 2011

    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:

    WPInstitute‎ 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.

  25. #26 FtK
    June 3, 2011
  26. #27 mary
    June 3, 2011

    @ 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”..

  27. #28 PatchUp
    June 3, 2011

    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?

    Gross.

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

  28. #29 jaranath
    June 3, 2011

    PeterW:

    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.

  29. #31 levi
    June 3, 2011

    Mary,
    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.

    Patchup,
    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”.

  30. #32 PeterW
    June 3, 2011

    jaranath,

    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?

  31. #33 jaranath
    June 4, 2011

    “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.

  32. #34 Jack
    June 4, 2011

    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!

  33. #35 Grant
    June 4, 2011

    @21 (Rebecca),

    In that conference you link to, there’s this presentation title:

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

  34. #36 Rebecca T
    June 4, 2011

    I saw that Grant.

    this is hot off the press from WPI this morning….

    http://treatingxmrv.blogspot.com/2011/06/comparison-of-methods-for-detection-and.html

  35. #37 Jack
    June 4, 2011

    For your delectation too:

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

    WPI Final reply to ‘Science’ – not sure if you have seen it?

  36. #38 gf1
    June 4, 2011

    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.

  37. #39 John C. Welch
    June 4, 2011

    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.

  38. #40 Truthcouragecompassion
    June 4, 2011

    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.

  39. #41 RRM
    June 4, 2011

    @John C. Welch

    A nice little video about the ridiculousness of these vast conspiracies:
    http://www.youtube.com/watch?v=uoZ71sj3Kn0

  40. #42 PatchUp
    June 4, 2011

    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.

  41. #43 daedalus2u
    June 4, 2011

    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.

  42. #44 Adeeno Viruss
    June 4, 2011

    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 doesn’t 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

  43. #45 Adeeno Viruss
    June 4, 2011

    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/

  44. #46 gf1
    June 4, 2011

    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?

  45. #47 Jack
    June 4, 2011

    @ 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?

  46. #48 james
    June 4, 2011

    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.

  47. #49 mike150160
    June 4, 2011

    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.

  48. #50 Ben
    June 4, 2011

    James: http://www.ncbi.nlm.nih.gov/pubmed/17982939

    The first line of the abstract for you: “In the last 10 years HIV-1/human T-cell leukemia virus (HIV-1/HTLV) coinfection has emerged as a worldwide health problem”

  49. #51 Poodle Stomper
    June 4, 2011

    James,

    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.

  50. #52 herr doktor bimler
    June 4, 2011

    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.

  51. #53 Kim
    June 4, 2011

    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?

  52. #54 Poodle Stomper
    June 4, 2011

    Kim,

    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.

  53. #55 PeterW
    June 4, 2011

    Kim,
    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)

  54. #56 herr doktor bimler
    June 4, 2011

    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.

  55. #57 Jack
    June 4, 2011

    @James

    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…

  56. #58 anonymouse
    June 4, 2011

    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:

    Quote
    “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).”

  57. #59 PeterW
    June 4, 2011

    patchup,

    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.
    http://www.biomedcentral.com/1471-2458/11/402

  58. #60 Jack
    June 4, 2011

    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…

    http://www.gcmaf.eu/info/

  59. #61 Grant
    June 5, 2011

    @Rebecca T,

    Sigh

    I’m 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 it’d just be ignored – ?

  60. #62 herr doktor bimler
    June 5, 2011

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

  61. #63 herr doktor bimler
    June 5, 2011

    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.

  62. #64 Censored Analyst
    June 5, 2011

    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?)

  63. #65 Patchup
    June 5, 2011

    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.

  64. #66 Mary
    June 5, 2011

    @ 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

  65. #67 gf1
    June 5, 2011

    @patchup:

    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. #68 anonymouse
    June 5, 2011

    @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.

  67. #69 ERV
    June 5, 2011

    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.

  68. #70 Mike
    June 5, 2011

    ERV
    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.

  69. #71 RRM
    June 5, 2011

    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….

  70. #72 anonymouse
    June 5, 2011

    @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?

  71. #73 Smurfette
    June 5, 2011

    anonymouse – She is licensed in Hawaii not Nevada.

  72. #74 anonymouse
    June 5, 2011

    @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.

  73. #75 Jack
    June 5, 2011

    Anyone listened to Prof. Racaniello’s TWiV broadcast?

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

  74. #76 Smurfette
    June 6, 2011

    anonymouse –

    The New Mexico record has no date and says status: pending, whatever that means.

    From her June 2 blog post:
    “have returned to private practice in Hawaii. I also work for the WPI, as an independent contractor, in very specific capacities, still intending to help open the clinic in Reno.”

    http://pvl.ehawaii.gov/pvlsearch/app?_a=d&_f=n&lictp=MD&licno=3944&off=&nm=JAMIE%20J%20DECKOFF-JONES%20%20other%3A%20JAMIE%20J%20DECKOFF-JONES

    http://medboard.nv.gov/Verification/

  75. #77 Rebecca T
    June 6, 2011

    Restricted infection of xenotropic murine leukemia virus-related virus in human lymphoid tissue
    http://www.retrovirology.com/c

    Absence of xenotropic murine leukaemia virus-related virus in Danish patients with multiple sclerosis
    http://www.retrovirology.com/c

    Heme oxygenase-1 activation inhibits XMRV pathogenesis and carcinogenesis in prostate cancer cells
    http://www.retrovirology.com/c

    XMRV replicates preferentially in mucosal sites in vivo: Relevance to XMRV transmission?
    http://www.retrovirology.com/c

    A prototype RT-PCR assay for detection of XMRV in multiple human sample types
    http://www.retrovirology.com/c

    Immune correlates of XMRV infection (Lombardi, Mikovits, etc)
    http://www.retrovirology.com/c

    Prevalence of XMRV in blood donors, HTLV and HIV cohorts
    http://www.retrovirology.com/c

    The effects of XMRV gene expression on the mouse prostate
    http://www.retrovirology.com/c

    XMRV: usage of receptors and potential co-receptors
    http://www.retrovirology.com/c

    Cell line tropism and replication of XMRV
    http://www.retrovirology.com/c

    Structure of the xenotropic murine leukaemia virus-related virus matrix protein
    http://www.retrovirology.com/c

    Development of XMRV producing B Cell lines from lymphomas from patients
    with Chronic Fatigue Syndrome (Ruscetti, Mikovits and others)
    http://www.retrovirology.com/c

    Multi-laboratory evaluations of XMRV nucleic acid (BWG report)
    http://www.retrovirology.com/c

    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
    http://www.retrovirology.com/c

    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
    http://www.retrovirology.com/c

    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
    http://www.retrovirology.com/c

    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
    http://www.retrovirology.com/c

    Human infection or lab artifact: will the real XMRV please stand up?
    Robert H Silverman
    http://www.retrovirology.com/c

  76. #78 virologystudent
    June 6, 2011

    looks like they have found xmrv in HIV cohorts…guess a lot of your HIV arguements re xmrv are flawed…as suspected by others.
    http://www.retrovirology.com/content/pdf/1742-4690-8-s1-a222.pdf

  77. #79 ERV
    June 6, 2011
  78. #80 virologystudent
    June 6, 2011

    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.

  79. #81 ERV
    June 6, 2011

    notavirologystudent– 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.

    The mother fucking abstract notavirologystudent linked to:

    No HIV-1 infected specimens were reactive.

  80. #82 herr doktor bimler
    June 6, 2011

    http://www.retrovirology.com/content/pdf/1742-4690-8-s1-a222.pdf

    Am I right in reading the conclusions of that paper as “Seropositive antibody tests for XMRV turn out to be an artefact from broadband antibodies also reacting to HMLV”?

  81. #83 ERV
    June 6, 2011

    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.”
    :)

  82. #84 herr doktor bimler
    June 6, 2011

    s/HMLV/HTLV.

  83. #85 Censored Analyst
    June 6, 2011

    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?

  84. #86 daedalus2u
    June 6, 2011

    There can be only one explanation.

    Homologous recombinaltion tiniker infection!

  85. #87 ERV
    June 6, 2011

    OMFG HIV-1 AND HTLV-1 HOMOLOGOUS RECOMBINALTION TINIKERING!!! NOOOOOOOO!!!!! NOOOOOOOOOOOOOOOOO!!!!!

  86. #88 Censored Analyst
    June 6, 2011

    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.

  87. #89 Lance
    June 7, 2011

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

  88. #90 Camaro
    June 7, 2011

    “looks like they have found xmrv in HIV cohorts…guess a lot of your HIV arguements re xmrv are flawed…as suspected by others.
    http://www.retrovirology.com/content/pdf/1742-4690-8-s1-a222.pdf

    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…

  89. #91 Censored Analyst
    June 7, 2011

    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.

    http://www.retrovirology.com/content/8/S1/A208/abstract/

    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?

  90. #92 Mary
    June 7, 2011

    @ 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.

  91. #93 ERV
    June 7, 2011

    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.

  92. #94 Jack
    June 7, 2011

    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):

    http://now.tufts.edu/articles/exonerating-virus

  93. #95 Dil
    June 7, 2011

    Hi looks like, VIPDX http://www.vipdx.com/ have shut down.

    its now, http://www.unevx.com … I think that stands for Uni nevada x ?

  94. #96 Censored Analyst
    June 7, 2011

    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.

  95. #97 Jack
    June 7, 2011

    @Dil

    ‘VIP Dx will be acquired by & move to the WPI’s new Reno-based Center for Molecular Medicine in August, taking the name Unevx.’

    That was due to happen last year – 2010 – but didn’t. Though you have to wonder at the timing now don’t you?

    http://www.prohealth.com/library/showarticle.cfm?LIBID=15391

  96. #98 anonymouse
    June 7, 2011

    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.

  97. #99 Mike
    June 7, 2011

    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?

  98. #100 brad
    June 7, 2011

    what about the upcoming dr. wilfred beiger study which is positive for xmrv, and the MLV gag sequences found by the people at cornell, in a NY state CFS cohort?

    http://niceguidelines.blogspot.com/2011/06/detection-of-gag-sequence-in-cfs.html