Hoping that everyone can relax a little, here’s yesterday’s song that I couldn’t figure out how to post from my iPhone. We could use a little levity, I think.
When I started writing this blog, it was with a sense of astonishment that the physicians treating the patients, Lyme and CFS, didn’t seem to recognize that they had a new quiver for their arrows. The few that did were quickly censured, or swore a few patients to secrecy. I had been housebound, sometimes bedbound, for years and never expected to return to work, so I didn’t care who I pissed off. Anything was better than the isolation. The good thing about not caring was that I learned to write authentically.
During my 25 years in practice, I didn’t interface at all with the scientific community. Doctors only. I had no idea about the realities of this parallel universe that so impacts what clinical choices are open to us. I thought that the Science paper would be hailed as a great breakthough; scientists and doctors would come together, bringing different things to the table. The pace of progress would accelerate. If only that had happened!
The scientists that I’ve criticized by name were Coffin, Stoye and Racaniello. The first two put themselves out there very early on in a way that appeared designed to stop progress. They also have a long history of publishing things together that minimized the risk, so aren’t clean on the issue and their opinions shouldn’t carry much weight. Dr. Coffin also took it upon himself to try to limit treatment options, my pet peeve.
Professor Racaniello is a media figure, so fair game. I admit to being influenced by hurt feelings in his case, because I wrote to him when I started arv’s, in the midst of the first blush of excitement, wanting to have a discussion with him about the science and he shut me down, much the way Jason did. And to me, the tee-shirt still seems over the top thoughtless, though I think now that he probably didn’t understand what he was doing. There are signs that he is growing, e.g. publishing Dave Tuller’s important piece on his blog.
I was angry at Dr. Singh when she published her negative paper, for the reasons I expressed back then, but essentially the same thing again; scientists trying to call the clinical shots, though in this case I understand that she felt that her former paper was too strongly in favor. I sent her testimonials from patients improving on arv’s at that time. My understanding from Dr. Enlander is that she is back on the case. I thought her a lovely person when I met her and I am glad she is again working on our behalf. The Mt. Sinai initiative is very exciting. It is difficult not to fantasize about Dr.’s Shadt and Lipkin putting their heads together.
And Jason. Sorry Jason, I didn’t mean to hurt your feelings. I hope you learned something from our scuffle. No hard feelings on my end.
I hope I haven’t forgotten anyone. A virtual olive branch offered to all, even those most aghast at my choices…
Believe it or not, there are scientists that share with me, and I protect their privacy. I swear I’ll disavow knowledge of our friendship to my dying day if that’s what any scientist willing to share wants. At risk of scaring off the people we want to be here, there is a tracker on the blog, that allows me to see the IP address, location and the name of the server that loads each blog page, as well as how many prior visits from that address. Institutional servers give the name of the institution. There are at least a dozen readers at the NCI and another dozen who connect from NIH servers in a few different cities. A couple at the CDC in Atlanta. Readers at many universities and teaching hospitals, including a few at Columbia and Harvard. Cancer institutes around the country. Only a few of these people participate in the discussion. This is a potentially powerful thing. When I worked for the WPI, one of things I most wanted to do was establish lines of communication between physicians and scientists with all kinds of points of view. There is little to be learned from consensus when the truth isn’t even on the table. If there is a way to salvage some part of that dream, I’d like to.
Many of the scientists came to read about Dr. Mikovits’ travails, but I am asking them to think about the science with us. In particular, I’d like to know your reactions to Dr. Snyderman’s data. Please adopt a handle and share with us. Your secret is safe with me. I ask you for the sake of the patients that you are now beginning to know, be bold. I realize that you are constrained by the knowledge that a patient community can do what we did, but there are 17 million patients worldwide in the ME/CFS cohort alone, who need creative thinking from you. There is every indication that our disease is reversible until it is very advanced. The unclaimed talent in the patient community is staggering, if only the disease could be calmed, not even cured. Look at me. I am productive after years of being almost unable to care for myself, let alone anyone else.
I would like to put an end to the discussion about the lab science in the Science paper, the WPI, VIP Dx. Nobody knows the answers, including the protagonists. I certainly have no basis for evaluating any of it. I defer to the scientific community to figure it out; discussing it here is not productive. At this point, it is non-contributory and boring. Take it someplace else. This is also not the place to argue about whether Dr. Mikovits should be canonized or not, though she is my friend, and I am very sorry for what is happening to her. But from a clinical point of view it is irrelevant. This blog is about developing a model for treatment and how to best live with the disease.
Thank you to our mold warriors for giving it another shot here, and for keeping it appropriate this time. I for one, think that your experiences of improvement without medication are significant. I also understand why you feel the need to tell others in the hope of reducing their suffering, as well as your frustration when you feel you aren’t being heard. I have been interested in Ritchie Shoemaker’s pioneering work, since 2002 when we shared a couple of patients with Ciguatera poisoning.
And a big thank you to In Vitro Infidelium for the considered comment this morning. No invective or politics at all. Just a reply about the scientific discussion at hand. It was a breath of fresh air. Thank you for the excellent paper by Voisset et al. The quote you lifted in your comment is precisely the point. Although it clearly isn’t a simple, straight forward infection, there is epidemiological evidence that it is an emerging disease of very great proportions, not a stable situation. AIDS isn’t simple and straightforward either, without a test, in that infected people can remain apparently healthy for a long time, or even indefinitely. Only a small percentage of people with HTLV ever become clinically ill from it. Inbred sick mice don’t get sick from their MLV’s, but wild mice and some other rodents can. All I am asking for is that it be studied, not shut down if this attempt fails. Also, that our therapeutic options not be limited by how slow the science will be to unfold, even in a best case scenario in which Dr. Lipkin finds something.
My hat is off to Dr. Lipkin. His finely worded communication to the patient community brought tears to my eyes. The only thing I would take exception with at all was the use of the word definitive. If by some quirk of fate, this study is completely negative, we beg you, use those specimens to take the next step.
Today’s song: Learning to Fly: by Tom Petty
>@ Anon 1 Jan 07.16
"RetractionWatch indicated there have been nearly 400 retractions this year alone. "
I asked RW about being able to break down the number of retractions by reason etc. but they hadn't replied before I posted but now they have and they do break them down. You can read Ivan's reply if you like:
http://retractionwatch.wordpress.com/2011/12/30/the-year-of-the-retraction-a-look-back-at-2011/#comment-8283
Of course that doesn't answer the other part of your point but that is unanswerable really isn't it? One of interpretation I am afraid. You think the retraction(s) were 'political' I dare say, where as I – do not.
>@Jack Russell
" That they are under no obligation to do this is my assumption based on the fact that they haven't and neither "
If they want patients to believe they conducted a robust study and allowed scientists to use proven assays they do need full transparency.
"And that link did confirm the funding allocated $1.043m I believe."
Why are you mentioning the cost?
"The thing is you are assuming that they 'found' something other than a contaminating XMRV/VP62 and also repeating this meme about how that was all 'they' ever looked for or were capable of looking for. And I am afraid I don't agree. Those sequences? All were effectively the same. All represented contamination. No evidence of a human pathogen. And the burden of proof is on the authors – is it not? I mean do please correct me on this because I am – clearly – not a scientist."
Sequence diversity cannot be used as evidence of contamination as most retroviruses do have zero to little sequence diversity. All isolates of HTLV-1 have less sequence diversity than what was thought to be the diversity of XMRV. The gag and partial pol regions sequenced by Mikvotis and Ruscetti also didn't match that of VP62 and are in fact polytropic. Those sequences are also not found in mice. This evidence was also supported with serology that identified an exogenous MRV and an EM of a virion of a gamma retrovirus that must have integrated and is of the same size as an MLV. The CDC and an independent lab both confirmed there was no contamination in the Mikvoits/Ruscetti samples. No MLV or VP62 plasmid. They never worked or had on their premises the VP62 plasmid.
"This was always about the claims made in Lombardi – and to a lesser extent Lo – that 'XMRV' was found in human blood. It was about the paper(s) themselves but the authors were unable to 'find' was it was they 'found' when their samples were blinded. There conclusions were erroneous – they didn't stand up – even to themselves."
The labs of Mikvoits, Ruscetti, Lo and Alter only identified polytropic sequences in their blinded studies. They never produced xenotropic data. Silverman alone provided xenotropic evidence that was later discovered to be contamination. His assay never worked for Mikvoits or Ruscetti, because his assay was not able to detect anything but the VP62 plasmid, not the viruses they were identifying with their assays. None of principle authors of those two papers, but Silverman, have provided data to refute the positive findings.
>"The XMRV/MLV study of Lipkin's will enable those same authors to apply their methodologies to 'find' what it was they think they 'found' in – and even outside of those papers – yet again."
If they are allowed to apply their methodologies to the same patients. They have never published any other study using the successful assays.
"but that also not all the original authors are participating in this Lipkin venture."
Alter was never to have taken part in this study. Who are you referring to?
"I would imagine that funding would be hard to come by and perhaps this is what Dr Snyderman's contact was referring to?"
If you want to believe that. Must be nice living in that world. People will still find a way to fund further research.
"'…the statements that they are making [in the Lo retraction] are just emphasising the point that this was not anybody’s fault."
Except that they were almost casting aspirations on Mikovits, Ruscetti and other researchers. What fault is there when no data refutes the evidence?
"Maybe someone will one day write a feature about all of this and get some decent input from the 'players'? "
It will always be dwarfed by the feature that will eventually be written about bad scientists and the failure to follow the scientific method. It is hard to miss the deliberate attempts to link Mikovits to Wakefield, but such behaviour reveals what is planned. Maybe security cameras should be fitted to the labs to prevent tampering with their experiments during the study, as anyone could be on campus.
There has been no reason given for the retraction that would justify it. Too late now to create one, they have participated in trying to re-write history. The viruses though cannot be made to disappear and will eventually be unavoidable.
>Jamie, I'm curious to know how you view Sjogrens syndrome in relation to the retroviral evidence for that disease and its relationship to ME? Sorry perhaps it's not a simple question.
>"It is hard to miss the deliberate attempts to link Mikovits to Wakefield, but such behaviour reveals what is planned."
And why not, she deserves it. And in case you missed this one lately, see below. Can't wait to hear the newest excuses.
No Evidence of Murine Leukemia Virus-Related Viruses in Live Attenuated Human Vaccines
William M. Switzer1*, HaoQiang Zheng1, Graham Simmons2, Yanchen Zhou2, Shaohua Tang1, Anupama Shankar1, Beatrix Kapusinszky2, Eric L. Delwart2, Walid Heneine1
1 Laboratory Branch, Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America, 2 Blood Systems Research Institute and Department of Laboratory Medicine, University of California (UCSF), San Francisco, San Francisco, California, United States of America
Conclusions
We found no evidence of XMRV and MLV in eight live attenuated human vaccines further supporting the safety of these vaccines. Our findings suggest that vaccines are an unlikely source of XMRV and MLV exposure in humans and are consistent with the mounting evidence on the absence of these viruses in humans.
>@Anon 2:36pm: "Can't wait to hear the newest excuses."
No need, Jamie wrote about it at length already: http://treatingxmrv.blogspot.com/2011/12/tunnel-vision.html
btw in case you missed it one out of their 8 WAS contaminated with an animal gammaretrovirus. Oh, and there was some human DNA contamination in there too. Funny how all sorts of funny things pop up when you go look for them. Oooops.
>"And why not, she deserves it. And in case you missed this one lately, see below. Can't wait to hear the newest excuses."
Deserves what and why?
"No Evidence of Murine Leukemia Virus-Related Viruses in Live Attenuated Human Vaccines"
That is vaccines used now and vaccines that have never been near a mouse and did you see the assays used?
>"btw in case you missed it one out of their 8 WAS contaminated with an animal gammaretrovirus."
No, it states "However, residual hamster DNA, but not RNA, containing novel endogenous gammaretrovirus sequences was detected in the JEV vaccine using PCR." Viral sequences, not viruses themselves.
>@Anon2:36
Why do you think vaccines are involved or that they must be involved? There is no reason to not think that the polytropic viruses present in people with ME have not jumper species through zoonosis. The same could be said of XMRV in prostate cancer.
>@Anon 3:15
"No, it states "However, residual hamster DNA, but not RNA, containing novel endogenous gammaretrovirus sequences was detected in the JEV vaccine using PCR." Viral sequences, not viruses themselves."
It does not mean they used an assay capable of detecting RNA, or the DNA or RNA of any other viruses present.
Golly if they want to argue that they didn't know about VP62/XMRV (which shush Silverman made in 2006) being in 22Rv1 for over 15 years, what else don't they know about and where did they go?
>page 4 of that vaccine-contamination paper says:
"the presence of particle associated JEV RNA in the two vaccines was confirmed by the detection of 46105 copies/ml JEV in both the untreated and the nuclease-treated SA-14-14-2 vaccine filtrates."
Yes, quite interesting that whenever someone actually looks, there are all sorts of things hiding in vaccines. From avian to hamster retroviruses, through to pig circovirus and human DNA, to all sorts of weird mysterious sequences.
Wouldn't it be great fun to carry out random analysis of vaccines more often, using different batches, older vaccines from different manufacturers etc.
>As long as assays designed to detect low levels of virus are used. It would only take one to get through.
>No need to disagree or question anything, Erik has a new blog that explains everything!
I remain the only original survivor of the inception of this syndrome to stick with the very first etiological agent that showed its presence. If for nothing else but the sake of science, it would have been inappropriate for me to remain silent and allow this cofactor to be forgotten.
"CFS" wasn't originally created as a category, but rather, the ambiguity of the definition was not sufficient to prevent people from thinking of it this way… and the CDC simply never made any objection or effort to clarify the confusion.
The CDC put in this one little "detail" to ensure that the syndrome really was delicately poised "en pointe" in pointing back at the original entity under consideration. Any doctor skilled enough to make it through the whole rigmarole and master "the dance" could stand on his toes and accomplish this complicated feat of finding the "possibly unique clinical entity".
Many doctors don't bother make the slightest effort to conform to the transparently obvious Fukuda-trivialization, and will confer "CFS" on anyone with a headache who says they get tired sometimes. It was very tempting to use the diagnosis of ME that I have, to just "let them have CFS", but that would not be an honest representation of the true events, and would require "buying into The Lie". Doing so makes someone part of the obfuscation, which I am not willing to do.
Remind doctors that according to the rules of language and science, terminology, first and foremost is to represent the entity to which the term is actually applied. When this is done, "CFS" is magically lifted away from whatever misconceptions doctors had, or would like to believe about it, and is forced to BE the actual illness that Hyde, Parish and Shelokov declared to possess all the primary determinants of ME.
The illness that was called CFS possessed all the primary determinants of ME plus all the new evidence accrued by Cheney, Peterson, Komaroff and Caligiuri. I see no reason to accept any "CFS concept" as valid which makes no attempt to address this evidence. Why should I? If it doesn't, it can't possibly be the same thing. My repetitions of "CFS happened exactly as described in Osler's Web" should make it plain that I am referring back to this evidence-base. I just saw a really fascinating phenomenon that was in addition to published material regarding the Tahoe illness, and thought it would be worthwhile to pursue.
Most chronic M.E. patients have 0 or low Sed Rates. This has caused some physicians to state that there is no inflammation (or –itis), in M.E. If a retrovirus fails to result in a zero ESD, then regardless of what it may cause, a retrovirus would still fail to explain the premier easily-testable blood abnormality in the illness that was called CFS. (And, "ME")
What a shame that we don't live in a sane world. I don't think there ever will be any such test.
Well, unfortunately, I am totally not joking about this being an insane world. The entire CFS debacle has been PURE insanity. Nor do I think that any unequivocal and foolproof test can be devised, for there will always be fools who would muck it up, somehow. I promised myself that I would tell the truth about the weird flue that the CDC called "CFS". The way the flu-like illness moved was exactly as Dr Hyde describes… which strongly indicates that "CFS" is NOT as OTHERS would have it. Regardless of a retroviral involvement, the theory still has to fit ALL the facts.
>Recent docket activity from Washoe County Court in re: CV11-03232 – WHITTEMORE PETERSON INST. VS. JUDY MIKOVITS:
" 25-Jan-2012 at 11:00
Honorable BRENT ADAMS
H776 – PROVE UP HEARING"
What is a "prove up hearing"?
(http://www.washoecourts.com/index.cfm?page=casedesc&case_id=CV11-03232)
>Wow that does explain everything "en pointe"! Fukuda = "Horse-like animal" ICC = "Stripes" When you hear hoofbeats, think horses. But when you see the stripes, it must be zebras. Brilliant.
>Don't get me wrong. I'm for all biomarker tests, what the Lights are doing with changes in genetic expression, Dr. Komaroff on changes in the brain, etc., all after exercise and in Komaroff's tests, also after sleep deprivation.
I'm for all of this, I support it.
I'm just raising here that this isn't applicable to everyone with CFS, particularly homebound people, those who can't travel or exercise.
If there were blood tests or other tests that could be done by a medical professional at a person's home, that needs to happen if everyone with CFS is tested eventually. So that would be a good goal.
Also, I don't know how Dr. Komaroff is doing this test, but if I, for one, suffer from sleep deprivation, a common problem, then I can't do one whit of exercise. So I wonder how this is happening and how the test subjects are doing this.
I hope Lipkin, et al., find something usable for us.
>"Lights are doing with changes in genetic expression,"
The Lights study was overhyped. They didnt use a strict entry criteria. The markers are consistent with deconditioning, partly because the control group were not really exercised as they did not have raised IL-6, unlike the CFS group.
A blood test would be great for bed bound diagnosis in the future, but blood is not something complained about by patients. If they were serious about looking for MRVs they would have begun tissue testing and would certainly be using it in the NIH study.. This is where 98% of the virus will reside. PCR is not capable of detecting such low levels unless the assay is spot on. There are many other viruses they can never find in blood unless they artificially innoculate.
>Prove up hearing – for the civil case
Here's a definition of prove-up hearing, that I found on-line:
A prove-up hearing is a short hearing before a judge when the case is uncontested, such as when it has been settled by agreement or default. In a default case, the other party doesn't appear to contest the matter. In a divorce, the petitioning spouse may be unable to locate the other spouse and get the court's permission to serve them by publication in a newspaper. If after the required period of publication, the other party doesn't appear to contest the divorce, a default may be filed. A prove-up hearing is typically used in divorce cases to request approval of the property settlement agreement and custodial arrangements. Prove-up hearings vary by state and county, so local law in your area should be consulted for specific requirements.
As we know the Judge Brent Adams struck Dr. Mikovits defense from the record. This is unlikely to hold long term as it is in effect denying her the right to a defence, as Freeman said, " there's never been adjudication on the merits" of the case either. Dr Mikovits will also not be able to hand over what she does not have. Adams also has a conflict of interest as he is a friend/long term acquaintance of the Whittemore's.
>You might be surprised how much we knew about the 1985 Raggedy Ann Disease.
That is…. if you ever bothered to look.
>@ anon 2:36 pm
It is important to note that Bill Switzer is a master of public health. Heneine is the fellow who was too busy with his vacation to bother to fly to Philly and learn how DeFrietas found her retrovirus. It is difficult for me to take this CDC study seriously.
No Evidence of Murine Leukemia Virus-Related Viruses in Live Attenuated Human Vaccines
William M. Switzer1*, HaoQiang Zheng1, Graham Simmons2, Yanchen Zhou2, Shaohua Tang1, Anupama Shankar1, Beatrix Kapusinszky2, Eric L. Delwart2, Walid Heneine1
1 Laboratory Branch, Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America, 2 Blood Systems Research Institute and Department of Laboratory Medicine, University of California (UCSF), San Francisco, San Francisco, California, United States of America
Conclusions
We found no evidence of XMRV and MLV in eight live attenuated human vaccines further supporting the safety of these vaccines. Our findings suggest that vaccines are an unlikely source of XMRV and MLV exposure in humans and are consistent with the mounting evidence on the absence of these viruses in humans.
>All vaccines and people too now have to be screened for this retrovirus.
http://www.mdpi.com/1999-4915/3/12/2442/
"The Human Lung Adenocarcinoma Cell Line EKVX Produces an Infectious Xenotropic Murine Leukemia Virus"
It does not match any known MLV and can infect human cells, that probably makes it an MRV.
>It's obvious how profoundly concerned the govcorp is about the association between vaccines and various diseases going public. I'm not sure we realize how enormously powerful that makes us.
>Thanks on the prove-up hearing information.
Surely Dr. Mikovits deserves a defense no matter what. She has civil liberties here. It's absurd that a friend of the Whittemores is the judge in this case. He should recuse himself.
Maybe there will have to be an appeal filed, but who knows who would hear that who wouldn't be a friend of the Whittemores?
Having a fair hearing may be very difficult for her in Nevada.
I'll reserve judgment on the Lights' studies. I thought there were four changes in genetic expression after exercise. They did get funding for further testing on this, and I assume they're doing that.
Also, other people with CFS have reported changes after that exercise stress test that don't happen with other diseases.
>Well vaccine links to autism got raised again tonight with this bit of news.
http://www.courthousenews.com/2012/01/04/BritMedJ.pdf
Andrew Wakefield is taking the BMJ, it's editor Godlee and Brian Deer to court.
>Erik, you wrote:
"Paula, you had no idea that you were reacting to mold until I explained it to you at the Peppermill. Wasn't it amazing to find out that this effect was in plain sight all along, yet had not risen to the point of your being conscious of it?
Did you think that told you everything you needed to know?
After all my posts in that private group, did you never stop to consider that there might be a lower level at which overt discernment fails, yet the immune system could still be affected?"
Erik,
I think that was not my point. I tried to explain two things. One is that I was in Dr. D-J's homes – three of them – without noticing toxic mold there AFTER learning from you what a contaminated building is like. Since that evening we had dinner there and Pete and I spent the night I am fairly cognizant of a contaminated building and get clear symptoms within an hour – depression, anxiety and elevated blood pressure. I got no symptoms in Dr. D-J's living room.
My other point was that I am certainly far less exposed to any toxic mold since we have moved to a clean dry house in Las Vegas, yet I am not fully recovered. While living in South Carolina in a home with a damaged and water filled foundation I improved tremendously on longterm antibiotics.
So I would have to conclude that total mold avoidance is not a cure, but maybe dealing with some other factor in the disease reduces the effects of toxic mold. I am not disagreeing with you. I know you understand the complexity of the mess we are all in.
>Perhaps you might not consciously be disagreeing, it's just your conceptual framework.
Toll receptor mediated responses don't much care about how much.
Only about how long, and whether it gets the "all clear" to damp down.
I never said it was a cure. just that so long as it works, I'll keep doing it.
>You can all chip in to buy Gerwyn a white lab coat since he is the only one according to his anon post with the knowledge and capability to oversee Lipkin's project
Or Read ERV's latest on St. Judy
No Prisoners, No Olive Branch, Jamie
Dr. Mikovits is a fraud and purposefully put XMRV plasmid into patient samples as noted by a commenter.
Lied about not taking any notebooks in contempt of court and then said she had them so she is a liar.
Lied about have WPI laptop than gave it back erased in contempt of court order.
Lied about the cell lines being hers instead of Lombardi.
How many patient lives have been lost on this wild goose chase over the last 4 years?
http://scienceblogs.com/erv/2012/01/indulging_idiots_looking_for_x.php
>We really needed the above post — NOT! Not helpful at all. Aimed to raise blood pressure.
Let's just all take a breath and see what happens in court, in the Lipkin-coordinated study which should bring results in March, in Lipkin's other viral study and in the other research going on.
We don't need hostile stuff. It isn't good for CFS sufferers.
>@Anon
"Dr. Mikovits is a fraud and purposefully put XMRV plasmid into patient samples as noted by a commenter."
There has never been plasmid found in her or Dr Ruscetti samples and there never worked woth it.
"Lied about not taking any notebooks in contempt of court and then said she had them so she is a liar."
When did she she say she had what the WPI claims was stolen?
"Lied about have WPI laptop than gave it back erased in contempt of court order."
When did she say she had what the WPI claims was stolen? The laptop was assessed by a WPI hired computer expert. Once the police returned the machine , if this is the machine claimed to have been stolen, data can be removed by whoever than has that computer. If you can see items are deleted you can provably retrieve them.
"Lied about the cell lines being hers instead of Lombardi."
Mikovits did say they were hers but involved in a grant.
>"And of course, the Usual Suspects acted with absolutely no data of any kind shown in any capacity to actual scientists."
ERV, you can read the autism data that was presented at the first XMRV conference. Mikovits and other hypothesised that vaccinations would trigger the virus in these children.
The polytropic sequences discovered by Mikovits and Ruscetti in separate blinded experiments are not an exact match for VP62 and no assay optimised to VP62 or anyone else using Silvermans assay from Lombardi has ever detected those viruses.
>The VP62 plasmid would not produce an immune response to an MLV virus or produce an EM of a budding/maturing virion that must have been integrated.
This is why it is important that no one is able to tamper with Mikovits and Ruscetti's samples in the NIH study and why no one should be using VP62. It isn't even an PMRV.
>The env sequences added to the genbank in the last year are also not from VP62/XMRV.
>>Andrew Wakefield is taking the BMJ, it's editor Godlee and Brian Deer to court.
Fiona Godlee was that awful awful woman from the BMJ invited to Invest in ME last year. She gave Andreas Kogelnik a terrible grilling after his talk as though she was looking for a fight. At the end of the conference she sat on the podium completely sour-faced and attacked the conference. Whilst some of her criticisms were justified (e.g. the subject matter being too theoretical and far removed from patients), I found her attitude and ignorance absolutely appalling. Luckily so did all the other patients there and she was given a right going over by the audience. It was the higlight of the day for all that were there! Sadly none of this made the conference dvd.
>"Fiona Godlee was that awful awful woman from the BMJ invited to Invest in ME last year."
It was her deputy editor that went to the Invest in ME conference. Her name is Trish Groves.
"Whilst some of her criticisms were justified (e.g. the subject matter being too theoretical and far removed from patients)"
I think you will find most patients have no trouble with theory and there is no treatments because biomedical research has been blocked.
>"The VP62 plasmid would not produce an immune response to an MLV virus or produce an EM of a budding/maturing virion that must have been integrated."
You see, this is absolutely and blatantly false.
VP62 plasmid can be transfected into 293T cells and produce plenty of active virions. These virions are MLVs. Specifically, they are MLVs that are xenotropic in nature.
Published data demonstrated that those virions can infect other cell types and integrate into DNA just as any other xeno-MLV would.
As a matter of fact, this virus has been used to infect macaques to illicit an immune response.
There are plenty of published articles on all that I said, no need for me to post them. Look them up for yourself.
I doubt that you will though. I'm curious as to what excuse you will come up with next for your conclusions that have no basis in reality.
>>It was her deputy editor that went to the Invest in ME conference. Her name is Trish Groves.
My bad.
>I think you will find most patients have no trouble with theory and there is no treatments because biomedical research has been blocked.
The issue isn't whether patients understand what is being presented, but whether it helps them. My opinion is that most of what is presented is "pie in the sky" and doesn't help patients at all. The Invest in ME conf is a rather strange hybrid in that although it is an academic conference, almost the entire audience is made up of patients/carers not academics / doctors.
The autism & lyme communities have whole conferences devoted treatment. Their situation is no different to ours (little or no research), but it doesn't stop them getting on with treatment.
The fact is there are treatments out there (this blog is an example), since quite a few patients are treating and some are getting better (the milder ones at least). It's true that we don't have the research that we deserve, but I for one am not about to wait decades for something that may or may not ever materialize.
Look at similar diseases (MS, ALS etc) which have had hundreds of millions in research dollars. Where are the cures? Whilst I fully agree ME needs research funding immediately, I do not expect any miracle cures. Even with Aids which has had billions of dollars pumped into it, patients still face major problems (leaky gut & premature ageing) which the medical community has completely failed to address.
Orthodox Medical research has serious limitations in the kinds of problems it looks at and is able to address. Maybe some of that will change with time, but I believe a large part of that is systemic. I don't believe we will never be able to rely 100% on medical research to cure us.
I wish this community was treatment-centric like the autism and lyme communities. We could make real strides "crowdsourcing" information as citychanger put it. Instead those of us who are treating are treated like pariahs in our own community.
>Sorry, last sentence in 2nd to last para should have read "I don't believe we will ever be able to rely 100% on medical research to cure us".
>@Anon 6:41 AM
The samples were blinded in Lombardi et al. The NCI samples were independently tested and did not contain the VP62 plasmid. The WPI samples were tested by the CDC and they could not find anything. Even they could not miss the VP62 plasmid. Dr Frank Ruscetti and Max Pfost tested the samples using Silvermans single round PCR and detected nothing. The source of the VP62 plasmid contamination was obviously Silverman's lab. VP62 is a laboratory artefact created in 2006. The VP62 plasmid could also have been transfected into 22Rv1.
"As a matter of fact, this virus has been used to infect macaques to illicit an immune response."
You would have to do that to a human to get a immune response. You cannot spike a blood sample and get an immune response in the plasma.
XMRV is only in the blood intermittently. It becomes undetectable in blood by PCR after the acute infectious phase as it is B cell tropic. The immune response fades with time due to the infection and destruction of follicular dendritic cells. If Lipkin is serious about looking for MRVs then he will look in tonsils, lung or lymph node tissue.
>@Anon 6:41 AM
Have whole virions been found in 293T cells and did they have that in the lab?
>http://www.aidsmap.com/en/Email-a-friend/tpl/1412195/page/1428114/
Michael Carter
Published: 09 August 2007
HIV-positive children who have experienced immune recovery due to treatment with potent anti-HIV therapy have a good response revaccination with the measles, mumps and rubella (MMR) vaccine, according to a Thai study published in the September 1st edition of Clinical Infectious Diseases.
The investigators also found that revaccination was safe, causing neither significant side-effectors nor a decline in CD4 cell percentage nor an increase in HIV viral load."
"Common childhood illnesses, such as measles, can be more severe in HIV-positive children. Although 98% of Thai children receive measles vaccination, with 88% – 95% developing protective antibodies, the efficacy of such vaccination is much lower in children with weak immune systems. A previous study in Thailand revealed that only 42% of HIV-positive children who received the MMR vaccine developed protective antibodies against measles."
"To answer these questions, investigators at Chiang Mai University Hospital in Thailand designed a prospective study involving 51 antiretroviral-treated HIV-positive children."
"The children had a mean age of 10 years, 53% were boys, 76% were known to have previously received MMR vaccination, and at the time of vaccination, 55% of children had protective antibodies against rubella and 20% had protective antibodies against mumps. The children had their antibody response to MMR vaccination checked four and 24 weeks after receiving the vaccination."
"Four weeks after revaccination with the MMR vaccine, 90% of children had protective levels of antibodies against measles, 78% had protective antibody levels for rubella, and all had protective antibodies against mumps.
After 24 weeks, the percentage of children with protective antibodies against each of the infections covered by the MMR vaccine had declined to 80% for measles, 61% for mumps and 94% for rubella."
>Anon 12:58 AM,
The use of the term "St. Judy" is very reminiscent of John Coffin's statement that "scientists will burn her at the stake."
I would be shocked if this person is a scientist and vigorously object to the question: "how many patient lives have been lost on this wild goose chase over the last 4 years." This question reveals this person’s bias as there is absolutely no evidence to support that contention. To the contrary, my life was saved by Dr. Mikovits or at least I have gotten an extra couple of years of life I wouldn't have had.
Anon 6:41 AM,
The question should be, how can VP62 explain the antibody that I have to MLV protein when I have never been exposed to VP62? I do not work in a laboratory and am not exposed to laboratory mice or to cell cultures. This is obviously a crucial question and I would appreciate a thoughtful and scientifically based answer.
Michael Snyderman, MD
>"Have whole virions been found in 293T cells and did they have that in the lab?"
Not in 293T cells per se, but researchers can transfect 293T cells with VP62 XMRV and the cell line will pump out plenty of virions that are infectious. This is what Ila Singh did. I saw this first hand.
>"The question should be, how can VP62 explain the antibody that I have to MLV protein when I have never been exposed to VP62? I do not work in a laboratory and am not exposed to laboratory mice or to cell cultures. This is obviously a crucial question and I would appreciate a thoughtful and scientifically based answer."
VP62 can't explain it. This virus clearly came from mice that were xenografted with prostate cancer cells. Multiple times. This data is very clear. On a side note – this in of itself is very interesting. Can specific human cells grafted onto mice serve to recruit MLVs? In other words – if one were to graft breast cancer cells, would MLVs be recruited that are cell-specific for breast cancer cells? Lots of retrovirologists are looking into this.
First, I don't know your history or how you have antisera that's specific for MLVs.
One possibility is that the assay to determine whether you have an MLV is flawed.
Can you describe to me, in detail, the assay used to detect your MLV antisera?
>@Anon 12:42 PM
"Not in 293T cells per se, but researchers can transfect 293T cells with VP62 XMRV and the cell line will pump out plenty of virions that are infectious. This is what Ila Singh did. I saw this first hand."
VP62 is a laboratory artefact not found in nature. These virions would not be MLVs, but MRVs. It is easy to identify that a sample is contaminated with the VP62 plasmid. The CDC and an independent lab have confirmed they are not. And the two labs never worked with the VP62 plasmid.
@Anon 12:50
"VP62 can't explain it. This virus clearly came from mice that were xenografted with prostate cancer cells. Multiple times. This data is very clear. On a side note – this in of itself is very interesting. Can specific human cells grafted onto mice serve to recruit MLVs? In other words – if one were to graft breast cancer cells, would MLVs be recruited that are cell-specific for breast cancer cells? Lots of retrovirologists are looking into this."
First you admit VP62 cannot explain it, then you say it came from mice? VP62 was a laboratory artefact made by Silverman in 2006. Everything else is speculation and not evidence.
"One possibility is that the assay to determine whether you have an MLV is flawed."
The assay used would be Dr Sandra Ruscetti's assay from Lombardi et al. The assay that cannot detect anything but an MLV virus, not a mouse ERV or a human ERV. It has never been found to have any flaws or cross react with anything else. You can find the details to this assay if you had read the Lombardi paper.
>Anon 1:35…
I'm not talking to you but to Dr. Snyderman. Mind your own business. Its clear you don't know the literature and are divisive to anyone who thinks differently than you.
Now, Dr. Snyderman, if you would mind explaining the assay, I'd be grateful. Is it truly the same one as in Lombardi et al.? The paper that was retracted?
>@Anon 1:40
What part of the post are you saying is wrong? Did you ever read Lombardi et al (2009)?
>Anon
Can you tell everyone how you would know 293T cells pump out virions after the laboratory artefact VP62/XMRV was added?
>"Can you tell everyone how you would know 293T cells pump out virions after the laboratory artefact VP62/XMRV was added?"
Because, VP62/XMRV is a plasmid that expresses all of the proteins. If you put this plasmid in a cell, 293T cells for example or any cell, all of the viral proteins get expressed. The virus assembles inside the cell, just as if the cell were infected. Virus can then bud from the cell and it can be used to study since it is infectious. It can be used to study integration for example:
From: "Integration Site Preference of Xenotropic Murine Leukemia Virus-Related Virus, a New Human Retrovirus Associated with Prostate Cancer▿"
Kim et al.,
To isolate virus, plasmid VP62/pcDNA3.1(−) containing the molecular clone of XMRV (28) was transfected into LNCaP cells with Lipofectamine 2000 (Invitrogen), and the cell culture supernatants were harvested at 13 days after transfection.
Something similar was done for most of the studies involving XMRV. Researchers had to make virus, this was the way to do it. Another way was just culturing 22RV1 cells which already have integrated virus.
>@Anon 2:32
"If you put this plasmid in a cell, 293T cells for example or any cell, all of the viral proteins get expressed. The virus assembles inside the cell, just as if the cell were infected. Virus can then bud from the cell and it can be used to study since it is infectious. It can be used to study integration for example:"
As there is no published research on 293T cells and VP62/XMRV how do you know 293T cells pump out virions after the laboratory artefact VP62/XMRV is added? The explanation you are now giving is your own assumptions not published research. The example you give is for LNCaP cells not 293T.
>Regardless of who you really are, to get an antibody response out of VP62 you would still need to transfect the plasmid into a permissive cell line and then inject the visions present into a patient.