Yesterday made clear that it is going to be a circus. All that’s needed is cotton candy and clowns. Annette Whittemore is still selling fairy dust and the fate of humanity depends on whether Judy Mikovits was perfect or not. It’s more exciting than a high wire act. The CAA, the folks at the CDC, most of the scientific community are all gleeful. They wanted to turn the iconoclast into Joan of Arc. Since she isn’t a saint, the Salem Witch Trials is a better metaphor. If the scientific community had actually been impartial, they wouldn’t be so happy. They say it needs to be about the science, not the scientist, but in fact, it was, and is, very personal, not about the science at all.
I am not a lab scientist and cannot evaluate the slides written about in yesterday’s Chicago Tribune. I refuse to read ERV’s blog on general principles. Trine Tsouderos seems to be slumming for sources. And Annette Whittemore, who has no viable option but to blame Dr. Mikovits for everything that ever happened at the WPI, has turned to the journalist with an agenda. The debunker. Necessity makes strange bedfellows. Even discounting my own experience of Dr. Mikovits, which makes fraud as an explanation for an error extremely unlikely, it makes no sense that she would intentionally subject herself to the possibility of that fraud being detected by using the same slide again on purpose. The only person who has a reason right now to characterize a mistake, if one was made, as fraud, is the person trying to save the WPI. And maybe ERV and her ilk. Now all that money that was just raised at Vivant and the WPI annual fund raiser can be spent on lawyers to go after Dr. Mikovits, as they try to continue to lure patients down the yellow brick road. The baby in this divorce? The grants. An institute without a chief scientist and a scientist without a lab.
What’s left? A lab running a bunch of tests that I can order from Quest and LabCorp, for which insurance will pay. A CEO who, when I was there, had six people working for her, including a personal assistant, while Dr. Mikovits had two, and then one. A doctor working for himself. An awful lot of empty space. Less than no respect at the medical school. A post doc. A paper which looks like, one way or another, it will be completely discredited soon with everybody calling everybody a liar. Some GenBank sequences and related patents, which I know very little about, but which I imagine are enough to muddy the waters for everyone else, and therefore prevent work from seeing the light of day. Why would anyone want to get into this mess now? My fear is that the WPI will try to exist without substance to preserve their intellectual property. At this point, the counter on the top of the side bar is counting more lost time.
All this in the context of: I still think a gamma retroviral hypothesis is the best one we have.
Today’s song: Stuck In The Middle With You
>"To accuse someone of falsifying data it would be prudent to have the proof in your own hands."
Uh…hello? Mikovits and Ruscetti ADMITTED that they basically "falsified" the data, but not including all relevant data. Doing so has totally destroyed the Science results, because they didn't treat controls the same as patients, by their own admittance.
>I want EXACT REPLICATION. Every experiment must be EXACTLY REPLICATED!
Now, but of course I left out the bit about using 5AZA. The drum in which it came specifically said "made in China" so that's why I concluded it was "not Germane".
But hey, I still require EXACT REPLICATION of my study's protocols.
>Were all of the samples in the original Science study treated with 5-AZA or just the patient samples? What proof it there that the 5-AZA treated samples were exhibiting exogenous vs. endogenous retrovirus? Since other scientists didn't know about the 5-AZA until recently, why weren't any of them informed until now? How could anyone be expected to perform the much harped about "exact replication study" when this information was seemingly deliberately witheld?
Jeri McClure Kurre
>FYI….according to an email conversation I had with Marguerite at Unevx, neither WPI nor Unevx plan to stand behind the test results from VIP-DX.
VIP-DX, which will close when a back log of testing is completed, does stand behind their results.
I am not surprised, but wanted to confirm what I was thinking.
>I'm weighing in here, late in the game.
I'm saddened yet grateful upon hearing Dr. Jamie Deckoff-Jones's perspective (as these last few blogs lay out). I know the full story is yet to be told, and I just hope that one day we do get to hear it. Meanwhile, from what I understand about the situation, I stand by Judy Mikovits and all truth-tellers, like Dr. Jamie, especially when it comes to telling a truth that will hopefully help me and 1 million others get our lives back after decades of hardship — and often outright hell — due to illness and resulting disability.
Did anyone hear about the 2011 Nobel Prize winner for chemistry yesterday? Dr. Shechtman. He made an important discovery, but, "It took years for Dr. Shechtman to convince others."
More on this story found in the New York Times article below.
http://www.nytimes.com/2011/10/06/science/06nobel.html
It says:
During the announcement, the Nobel committee noted that one colleague initially said, “Go away, Danny,” because he thought there was a simpler explanation for what Dr. Shechtman had observed. Many scientists — notably Linus Pauling, the Nobel-winning giant of chemistry — argued vehemently that Dr. Shechtman’s data could be explained by “twinning,” where two ordinary periodic crystals are fused together at an angle.
“That must have been intimidating,” said Nancy B. Jackson, president of the American Chemical Society. “When he first discovered these materials, nobody thought they could exist. It was one of these great scientific stories that his fellow scientists thought was impossible, but through time, people came to realize he was right.”
My point is that it is not unusual to have trailblazers of all kinds (including scientific ones) shot down, vilified, ostracized and belitted. And guess what? Sometimes they are actually right.
Go, Judy!
And thanks, Dr. Jamie, for bravely sharing what you understand about the situation and for wanting to help the patients so very much. We are grateful.
– Rivka
>Oh, your blog posts are so good. I wrote some messages at the CFIDS Association blog in the Research 1st section saying that whatever happens in this scrap has to be objective and scientific, without vilification and burning anyone at the stake — most notably a woman in this case, a not inconsequential point.
If there are scientific errors, then they need to be corrected. In the history of science and medicine, there are no successes without mistakes or even failures. There is no direct straight line to victory.
I believe Judy Mikovits has our interests are heart, that she has principles. I think that science and money-making should not be partners. Scientific discovery should be based on cooperation and sharing, not nastiness and profit-making. After well, our lives are at stake here.
I hope that Judy Mikovits can get her cell lines and her lab notes, but companies often win out in these intellectual property fights, unfortunately.
In all this, we are forgotten. So is integrity and principle and just basic human decency as to how to treat other people, and a woman at that.
I hope she can get a place to do research and take her findings with her.
I'm shocked at that red T-shirt. It's just outrageous.
I'm glad I found your blog. I agree with it and am glad to read it.
>"I believe Judy Mikovits has our interests are heart, that she has principles. I think that science and money-making should not be partners."
You do realize that Judy Mikovits has a patents for XMRV testing?
Yup. Shouldn't be about money. After all, she cares for us so much.
>RRMs entire debating repertoire :
1. Repeat the same thing ad nauseam in the hope someone believes it.
2. ALWAYS change the subject when someone makes things tricky for you (see above).
Vinay Pathak said they used an RT-PCR on RNA. Where is that in the paper?
>"You do realize that Judy Mikovits has a patents for XMRV testing?"
Really!?! Well, that explains a lot.
How much money do we think she's made off of this community so far? Any guesses?
>And is there any way that people can get it back if she goes to jail?
>@Anonymous October 7, 2011 1:10 AM
I don't change the subject if someone askes me anything about something I've posted. I will always explain myself when I assert something is illogical/bad science.
If you have any problem with understanding any of the things I have ever posted on the subject, please state what it is and I will gladly explain why I hold that position.
The above is also why *I* don't use socket puppets to try and "advance" my arguments.
As for your question, it's not in the Paprotka et al. paper. Pathak probably just misspoke and even if he didn't, I fail to see how this would be any reason of concern. In fact, he could have left six additional tests out of the final paper and it would still have been rightfully accepted, because a journal's reviewers will just assess the submitted data and eveluate if the data can carry the authors' conclusions. Only in rather extreme cases, when it is clear that damaging data has been left out of a paper, will a journal consider investigating.
WPI for instance started their investigation by checking 20 patient samples. Only 2 of these were positive right away, but after repeated testing, all of them eventually became positive (see Nature: Fighting for a Cause).
Now, this was left out of the paper and would have been pretty helpful to other scientists (because it would show that repeated PCR testing was necessary). However, this "omission" is no reason for retraction (or any other action), because these data were not submitted to Science and therefore not subject to peer review. It's as simple as that.
Now, if you think there is still something "sinister" about the Paprotka et al. study, you should really act on it. You could contact the corresponding author (Pathak) and ask for kind of explanation. You could also write a letter to the editor of Science. You could try another paper (team up with Alter for a PNAS paper and he can even circumvent proper peer review). You could also try to write an post-publication peer review, which can be done at F1000.
However, copying/pasting some standard critique in comment sections will lead you nowhere. Yes, in ten years, you could still say in the echo chambers that "this was burried" and that only you "uncovered the truth about this 22Rv1 scandal but that no one (in those comment sections?) would listen". Is that what you want?
>Pathak has stated it was none of the assays named in the paper Paprotka et al. It is very easy to see why John Coffin has a conflict of interest in having Frank Ruscetti and Judy Mikovits paper retracted.
>Mikovits deliberate withholding of the use of 5-AZA from the Science paper, and the ensuing two years of "You aren't replicating my methods!" ( because she had deliberately withheld them ), is utterly despicable behaviour.
There is no spin that can be put on this disgraceful story.
>Gerwyn said: "As the subject matter is biochemical testing and chemistry in general I would not expect a biologist or more accurately a parasitologist to understand"
Ahahahaha
This Gerwyn *claims* to have just a degree in psychology and and a diploma in law, and yet feels able to tell scientists that they can't possible understand.
Get over yourself Gerwyn, you're an amateur.
>Just a comment to those who are skeptical that ARVs are responsible for clinical improvements noted by Dr Snyderman and others who are taking them.
I suffer the classic remitting/relapsing form of ME and often do not know what precipitates a serious relapse, even after 28 years of ME. It's a mystifying illness to me still.
One thing I am absolutely certain about though is what medications make me feel better, worse, or have no ill-effect. There has never been any uncertainty on that front. If I cannot tolerate a treatment it becomes apparent quickly and needs to be stopped quickly because a worsening of the illness will come as sure as night follows day, and it may take a long, long time to recover from.
If something makes me feel better (as with the antivirals I am currently taking, and another old drug which improves my sleep) it's equally apparent, and I know it quite quickly.
I've never experienced a placebo improvement on anything. (I wish!)
With both the drugs I'm on now I have experienced a worsening of symptoms to begin with, and can have periods of feeling a little off on them, but I have had an innate sense that they are doing good from the moment I started taking them. No question. Even when i feel a bit unwell on them, it's kind of like in the same way you might if you are on antibiotics for a bacterial infection.
I think the innate sense is as good a barometer as any numbers on a bit of paper out of a lab. My body may be badly broken, but my innate sense still seems to work ok. I don't think there's anything terribly mysterious or unreliable about your innate sense letting you know what medication is working and what is not.
So if people say they think the ARVs are making them better I believe they know best about that. This is a very drug sensitive illness. This is one area we can be confident about I think because if a drug makes us sick or makes no difference, we know it. Period.
It always makes me a bit squirmy to hear people being doubted (often repeatedly on this forum) about improvements they've made on drugs. It kind of has a ring of the "ME is all in your head" about it to me. I.e, "you misunderstand what is going on in your body. Your doctor/scientist knows better". I think we've all had quite enough of that.
BTW,I'm commenting specifically about drug improvements here not the issue of avoidance (to head off any mold analogising…)
>Most of the questions here about the ARV's were about whether the drugs might be having some other sort of positive effect (killing some other pathogen, immunomodulatory, etc.) rather than having anything to do with XMRV.
And as it turns out, everybody now agrees the drugs weren't addressing XMRV (because that's not a problem in this disease), so those questions were justified!
>Frank Ruscetti, who performed all the western blots and Judy Mikovits, have not withheld any information that was germane.
>@Anon 6:27 AM
You may wish to check what you have written
VP62/XMRV is associated with prostate cancer. HGRVs are associated with ME/CFS. ARVs should not be expected to deal with HGRVs in everyone infected with a gammaretrovirus as they preferentially propagate through clonal expansion and not reverse transcriptase as HIV does.
>A parasitologist is not the same as being a retrovirologist. One understands parasites, the other retroviruses.
>The patent is interesting. There are two applications, US20110151431 and US20110117056 (just search on freepatentsonline to find them).
One is based on antibody based detection methods for XMRV antigens and the other is based on diagnosis of diseases associated with the virus.
Of particular interest is the fact that both applications contain several figures from the Science paper as evidence to support their claims. One of these is the famous figure 2C – in the patents they are retitled 2D – with the following description:
“Lysates from normal PBMCs (lanes 1, 2, 4, 5 and 7) or from subjects WPI-1235 (lane 3) and WPI-1236 (lane 6) were activated for 7 days with PHA and IL-2 and then analyzed by Western blot using rat anti-SFFV env monoclonal antibody (top panel) or goat anti-R-MuLV p30 (bottom panel). Lane 8: SFFV-infected mouse HCD-57 cells. Molecular weight markers are shown on the left.”
In other words they are clear what activation means – it's the standard PHA and IL-2 treatment – yet they again leave out the fact that 5-Aza has been added to the patient samples.
If they have read the application form they should be aware that "willful false statements and the like so made are punishable by fine or imprisonment, or both under 18 U.S.C. 1001 and that such willful false statements may jeopardize the validity of the application or any patent issued theron"
Oh dear.
>at the person
Repeat the same thing ad nauseam in the hope someone believes it
not really its more like repeating it hoping that someone might have the understanding of chemistry and biochemistry needed to understand it
sadly wasted in your case
>PS
It has already been submitted to Science and the editor has not even acknowledged it.
>in case you missed it. Any challenge to factual accuracy gratefully received
The only grounds for the forcible retraction of Lombardi et al., is fraud. Thus Coffin and Stoye must be at least tactically be accusing Dr Ruscetti of fraud as he performed all the western blots.
Now as to the question of fraud I invite the reader to form an opinion of the data presented in Paprotka et al. The paper that claims VP62/XMRV was created when human prostate cancer cells were xenografted into mice, if the early xenografts were VP62/XMRV free and the later xenografts contained VP62/XMRV.
1) Failure to name the only assay used to screen the later xenografts. Results of which are mixed together in Fig. 2E, but are said in the paper to be a PCR assay. At CROI Pathak admitted that this was an RT-PCR assay on RNA. Instead the only 2 assays named in the paper are PCR and quantitative real-time PCR (qPCR).
2) Failure to determine if the later xenografts came from the human prostrate cancer cell line CWR22Rv1 and if they were contaminated with cells from another cell line. This is despite testing other xenografts and cells to ensure the timeline of CWR22Rv1 was available and not contaminated.
3) Failure to base the results of the study and conclusion on the only assay that had a predetermined sensitivity (1-3 copies per 100 cells). The sensitivity having been determined after this assay DID detect VP62/XMRV in the early xenografts, two strains of lab mice and derived cell lines, 22Rv1 and CWR-R1
4) Failure to realize that other regions of VP62/XMRV require much more sensitive assays than the only assay with a predetermined sensitivity, the quantitative real-time PCR.
5) Failure to predetermine the sensitivity of the PCR assay on which all the results were based. Which then at best detected 2000 copies per 100 cells in the derived cell lines, but not in the early xenografts.
6) Failure to objectively name the 1 mouse virus discovered. Instead they choose a political name and called it PreXMRV-2, despite them not knowing if it could be a descendant of VP62/XMRV or even a cousin.
7) Failure to detect PreXMRV-1 in a single source. Instead it was created from sections of unidentified virus from 3 sources and therefore does not exist.
8) Failure to screen any wild mice for VP62/XMRV or PreXMRV-2.
9) Only screening 15 lab mice for PreXMRV-2.
10) Only screening 89 lab mice for VP62/ XMRV.
11) Stating that one set of primers used for the PCR assay, on which the results and conclusions were based, could also detect PreXMRV-1, despite having never detected this hypothetical virus from a single source. That same PCR with those primers then identified positives in the early xenografts, but was claimed to be PreXMRV-1, even though that assay could detect VP62/XMRV and PreXMRV-1 had still never been shown to exist.
>The only grounds for the forcible retraction of Lombardi et al., is fraud. Thus Coffin and Stoye must be at least tactically be accusing Dr Ruscetti of fraud as he performed all the western blots.
Now as to the question of fraud I invite the reader to form an opinion of the data presented in Paprotka et al. The paper that claims VP62/XMRV was created when human prostate cancer cells were xenografted into mice, if the early xenografts were VP62/XMRV free and the later xenografts contained VP62/XMRV.
1) Failure to name the only assay used to screen the later xenografts. Results of which are mixed together in Fig. 2E, but are said in the paper to be a PCR assay. At CROI Pathak admitted that this was an RT-PCR assay on RNA. Instead the only 2 assays named in the paper are PCR and quantitative real-time PCR (qPCR).
2) Failure to determine if the later xenografts came from the human prostrate cancer cell line CWR22Rv1 and if they were contaminated with cells from another cell line. This is despite testing other xenografts and cells to ensure the timeline of CWR22Rv1 was available and not contaminated.
3) Failure to base the results of the study and conclusion on the only assay that had a predetermined sensitivity (1-3 copies per 100 cells). The sensitivity having been determined after this assay DID detect VP62/XMRV in the early xenografts, two strains of lab mice and derived cell lines, 22Rv1 and CWR-R1
4) Failure to realize that other regions of VP62/XMRV require much more sensitive assays than the only assay with a predetermined sensitivity, the quantitative real-time PCR.
5) Failure to predetermine the sensitivity of the PCR assay on which all the results were based. Which then at best detected 2000 copies per 100 cells in the derived cell lines, but not in the early xenografts.
6) Failure to objectively name the 1 mouse virus discovered. Instead they choose a political name and called it PreXMRV-2, despite them not knowing if it could be a descendant of VP62/XMRV or even a cousin.
7) Failure to detect PreXMRV-1 in a single source. Instead it was created from sections of unidentified virus from 3 sources and therefore does not exist.
8) Failure to screen any wild mice for VP62/XMRV or PreXMRV-2.
9) Only screening 15 lab mice for PreXMRV-2.
10) Only screening 89 lab mice for VP62/ XMRV.
11) Stating that one set of primers used for the PCR assay, on which the results and conclusions were based, could also detect PreXMRV-1, despite having never detected this hypothetical virus from a single source. That same PCR with those primers then identified positives in the early xenografts, but was claimed to be PreXMRV-1, even though that assay could detect VP62/XMRV and PreXMRV-1 had still never been shown to exist.
>The comments on the Paprotka et al. are another great example of wishful thinking of the “XMRV-believers”.
I checked the paper and all assays are perfectly described in the supporting online material (it’s an extra file that can be downloaded on the Science page).
The rest of this “propaganda” is based on the assumption that PreXMRV-1 doesn’t exist. Why do you think that? I don’t get it. I read that they isolated PreXMRV-1 completely from all early xenografts and the 2 nude mice each. Where do you read that they put it together from different sources?!? This virus is real and I don’t understand why in these blogs the reality is ignored again and again and again.
Maybe you should ignore science completely and admit to yourself that you think like the creationists that believe Adam and Eve rode on dinosaurs 6000 years ago. If you feel better by believing in XMRV, that’s fine, but be aware that there is no REPRODUCIBLE evidence that XMRV causes any disease or is in humans.
Chuck Norris
>@Chuck Norris
The viruses discovered by Dr Ruscetti and Dr Mikovits are HGRVs. They have been proven to not b VP62/XMRV.
PreXMRV-1, if not isolated from a single source, has not been shown to exist.
"The complete sequence of PreXMRV-1 was determined from the early passage xenografts, the NU/NU and Hsd strains, and the CWR-R1 cell line."
The fact is that Vinay Pathak has stated that they used only an RT-PCR assay on the later xenografts and then failed to include this assay in the paper, although the results are present.
>Whether a pathogen causes disease has to be tested. At this time no study has attempted to see whether HGRVs cause disease. So your opinion is premature and illogical.
>I think the first thing to clear up is that telling a retrovirologist what to do and telling a scientist what to do are not neccessarily the same thing.No scientist would use an unvalidated assay or attempt to "replicate" a study by changing all independent variables.As the vast majority of retrovirologists appear to be doing this then they cant legitimately be called scientists.
unscientific practices within this paragidm allowed the HIV virus to rage within the human population while the bunch of retrovirologists that controlled the grant money kept insisting that they knew that retroviruses could not infect humans.How many people died as a result of such breathtaking arrogance.Now the same bunch are at it again.
chuck obviously has problems with the written word
This is what passes for science in Retrovirology
1) Failure to name the only assay used to screen the later xenografts. Results of which are mixed together in Fig. 2E, but are said in the paper to be a PCR assay. At CROI Pathak admitted that this was an RT-PCR assay on RNA. Instead the only 2 assays named in the paper are PCR and quantitative real-time PCR (qPCR).
2) Failure to determine if the later xenografts came from the human prostrate cancer cell line CWR22Rv1 and if they were contaminated with cells from another cell line. This is despite testing other xenografts and cells to ensure the timeline of CWR22Rv1 was available and not contaminated.
3) Failure to base the results of the study and conclusion on the only assay that had a predetermined sensitivity (1-3 copies per 100 cells). The sensitivity having been determined after this assay DID detect VP62/XMRV in the early xenografts, two strains of lab mice and derived cell lines, 22Rv1 and CWR-R1
4) Failure to realize that other regions of VP62/XMRV require much more sensitive assays than the only assay with a predetermined sensitivity, the quantitative real-time PCR.
5) Failure to predetermine the sensitivity of the PCR assay on which all the results were based. Which then at best detected 2000 copies per 100 cells in the derived cell lines, but not in the early xenografts.
6) Failure to objectively name the 1 mouse virus discovered. Instead they choose a political name and called it PreXMRV-2, despite them not knowing if it could be a descendant of VP62/XMRV or even a cousin.
7) Failure to detect PreXMRV-1 in a single source. Instead it was created from sections of unidentified virus from 3 sources and therefore does not exist.
8) Failure to screen any wild mice for VP62/XMRV or PreXMRV-2.
9) Only screening 15 lab mice for PreXMRV-2.
10) Only screening 89 lab mice for VP62/ XMRV.
11) Stating that one set of primers used for the PCR assay, on which the results and conclusions were based, could also detect PreXMRV-1, despite having never detected this hypothetical virus from a single source. That same PCR with those primers then identified positives in the early xenografts, but was claimed to be PreXMRV-1, even though that assay could detect VP62/XMRV and PreXMRV-1 had still never been shown to exist.
>So why is Lombardi et al. with the title “Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome” not retracted? The title clearly says XMRV. If it is not XMRV what is left from Lombardi et al.?!?!
If they found HGRVs where is the evidence for that? Every scientist working on retroviruses would be happy to find HGRVs and publish a high impact paper. But nobody can, because HGRVs simply don’t exist.
Regarding PreXMRV-1, I heard Coffin already presented the integration site of this virus in the MOUSE genome. So it's real. Do you really want to say one of the most respected virologists with over 200 publications (none of them has been ever retracted) invents this?!?!?
If you want to believe in HGRVs do it, but there will be probably never any scientific evidence for this hypothesis.
Chuck Norris
>xenotropic merely refers to the host range of a mulv class virus. The first paper in america claiming to isolate HIV actually claimed to have isolated HTLV-111.That was in science as well and of course was not retracted
I am glad that you accept that the gammaretroviruses detected in the pmbcs of people with ME have nothing to do with the vp-62 sequence which coffin erroneously defined as being XMRV
>The addition of AZA is not germane either to the study or to the patent. AZA does not activate PMBCs. They were already activated prior to the addition of AZA.
>There were a couple of comments about Dr. Mikovits making money from the WPI patents. Dr. Mikovits waived her individual intellectual property rights in favor of the WPI. I was told that this was true of all involved.
Jamie
>The main egregious error in Paprotka et al. (2011) is the failure to name the only assay used to screen the later xenografts. Results of which are mixed together in Fig. 2E, but are said in the paper to be a PCR assay. At CROI Pathak admitted that this was an RT-PCR assay on RNA. Instead the only 2 assays named in the paper are PCR and quantitative real-time PCR (qPCR).
That is reason for an automatic retraction.
>"The addition of AZA is not germane…." You have got to be kidding. If it is so irrelevant, then why use it at all? According to the Ottowa presentation, it seems that use of AZA is VERY relevant. It was that presentation that claimed to demonstrate that it required the addition of AZA to CFS patient's PBMC's in order to express viral proteins. So, I will ask again: WHY was this information intentionally kept secret?
Jeri McClure Kurre
>@Jeri McClure Kurre
Dr Frank Ruscetti and Dr Mikovits agree that use of AZA was not germane as the virus was, due to Silverman's work, thought to be XMRV. Now it is known that they discovered HGRVs, which is why it was included by Rusetti for the presentation in Ottawa.
>The desire that John Coffin and Jonathan Stoye have to retract the paper Lombardi et al. without reason should not be underestimated. Coffin paper Paprotka et al. failed to name or describe the only assay used to screen the later xenografts. This piece of evidence is what the speculative paper hinges upon.
As the assay needed was an RT-PCR assay then it is apparent that a more sensitive assay was required than for any other cell line, xenograft or mouse to detect VP62/XMRV.
Once this evidence is combined with the knowledge that the later xenografts were also never assessed to determine whether they were from the same cell line, or if they were contaminated with any of human cells (a commonly acknowledged problem), than it is obvious that the paper is flawed.
As the entire premise of the paper rests on VP62/XMRV having been created during passage through mice, there is now no link to the passage through mice. Evidence was not present that would rule out the early xenografts being infected with VP62/XMRV, although the evidence in the paper does indicate the virus is present there. And infection of the later xenografts from another cell line, created from a person infected with VP62/XMRV has not been ruled out.
>@Anonymous Oct.7, 10:18 .M.
Your response doesn't make any sense to me. So the undisclosed use of AZA is irrelevant because it was originally thought to be XMRV, but now they are claiming it was HGRVs. So what. How does that make the addition of AZA irrelevant? According to their own work, they are showing that the addition of AZA is necessary to show viral expression. So, how is it that this is irrelevant?
Jeri McClure Kurre
>the B cells had already been activated
why would the use of AZA be germane in that context?
>AZA does not activate PMBCs. They were already activated prior to the addition of AZA. Use of AZA was not germane to what Silverman originally named XMRV, it is now we know they found HGRVs.
>"I am obviously not interested in pleasing the scientific community. They are the ones that have failed us. The burden of proof is on them. Not me. They need to get done with their decades long coffee break and get to work."
WOW…. Amazing how she continues to blast the WHOLE scientific community.
I guess I better get back to my coffee…
See my comments way above about spewing hate towards researchers…
Jason
>Jason and any/everyone else who deigns to tell extremely sick patients what they should and shouldn’t be doing, when they admittedly know nothing about the disease:
I am one of the few fortunate ones to be a patient of Dr Jamie’s. Fortunate that I could still make the trip (it was touch and go), fortunate that I’m not destitute after being unable to work for 20 years, fortunate in having a spouse that sticks by me through all this, and fortunate enough to have had family take care of my airfare.
From the beginning of our correspondence, Dr Jamie said, “no guarantees about ARV’s”. Okay, I’ll accept that.
After two appointments, we haven’t even had the ARV talk.
In other words, people – she isn’t pushing anything on anybody. She is, however, the only doctor in 30 plus years to “get it”. I don’t have to deal with disbelief, disdain, or dismissal. We will collaborate on getting me as “well” as it’s possible to get. With some of the other meds I’ve had thrown at me (one doc put me on phen-fen for godsakes!) and my reactions to them, if I try ARV’s it’s not going to be any worse than what’s all ready gone on.
Right now we’re focused on getting me off the damn opiates. Whichever way we decide to proceed, I want nothing else clouding the picture. She sure as hell didn’t prescribe this drug that is a nightmare it’s own self.
For you doubters and haters, it is at best laughable and at worst sado-masochistic, that you wag fingers and call us nutty when these drugs are prophylactically handed out like condoms at the free clinic to perfectly healthy people. A real head shaker, that.
I’ve been waiting too long for a doctor that will think outside the box and challenge the status quo. The most productive years of my life are gone. It’s time to go for it and right now, this is my horse in the race. I’m very aware that 10 years from now, what we’re trying will look primitive. I don’t give a rip. I’m perfectly fine guinea pigging myself for my son and every other person sick with this cursed disease.
So please, take your toys to some other sandbox. We’re one of the better educated patient groups out there (by necessity!) and we can make our own decisions without your bullying and name calling.
>Yeah Jason, I saw that too. Almost an unbelievably childish thing for a professional to say.
MattK
>The second problem with Paprotka et al.m 2011, was failure to determine if the later xenografts came from the human prostrate cancer cell line CWR22Rv1 and if they were contaminated with cells from another cell line. This is despite testing other xenografts and cells to ensure the timeline of CWR22Rv1 was available and not contaminated.
>Jason et al
I am most strongly identified with being a patient and the mother of a patient. My husband is a little sick too and my son has subclinical signs of the illness. My stepfather died of a Gleason 9 prostate cancer and my half-brother is an autistic savant. By the grace of God, I am taking care of patients again in a very collaborative way. Appearing "professional" is unimportant to me. I am concerned only with legal, and trust me, I am very careful about that. My goal is to help some people, who are trapped in hell, get comfortable. While you figure out what they have.
Jamie
>Jamie, "My goal is to help some people, who are trapped in hell, get comfortable. While you figure out what they have." this is admirable and I don't doubt it. It would be nice if you would extend the basic assumptions of good intent that you would like applied to yourself and apply them to others.
MattK
>When others have already failed to behave with good intent, it is reasonable for others to be vocal about their disgust.
>It is appropriate not to blame the Scientific community in general.
We have seen it is actually the establishment they work in that creates barriers to researching ME/CFS, despite obstacles being blamed on the patients. Any ME researcher that challenges the establishment puts their very career on the line.
http://www.youtube.com/watch?v=KhB-701-BMU
Although, feel free to be dismayed at the high level of politics and astroturf being laid down by supposedly well meaning scientists.
This is why I wont give up on those attacked by the scientific community on the strength of over-inflated moral indignation.
Now is the time to come out and support those who risk their careers for our illness more than ever.
>Matt,
Intent is not the issue. Blinders are the problem. The Whittemore's had good intentions, and what a mess!
We need some out-of-the box thinkers in the scientific community to think about us. I am willing to be the target of their wrath, if they will take off the blinders and notice us. If it were an easy problem, somebody would have solved it by now.
Jamie
>WPI (Annette?) has just accused Dr Judy of lying even though their statement was that Dr Judy was fired because she would not hand over a Cell line.
"Whittemore Peterson Institute
The cirumstances regarding the cell lines that were sent to Dr. Lombardi have been misreprensented by Judy. These cell lines were ordered for Dr. Lombardi's research and had nothing to do with the institute's RO1.
29 minutes ago"
On their FB Q&A session… lots of Qs, not many As.
>I would just like to ask all those from "research/scientific community" to please watch Natalie Boulton and Josh Biggs' ME film "Voices from the Shadows". It is available for live streaming, free of charge online from now until 10/30/11. The film is just over an hour and I think it may a useful tool to understanding where the patients' mistrust of the medical establishment/scientific community is coming from and why their is such allegiance to people who "get it" like Dr.'s Deckoff-Jones and Mickovitz. I would also hope it would help to explain why the tone of Abbie's blog is so offensive and that it would encourage researchers, scientists, doctors, commentators, etc., to take some responsibility for building trust with the patient community (rather than being dismissive), particularly if they are so certain that they can provide answers.
The film can be accessed for live streaming at http://mubi.com/festivals/mill-valley. It will not be downloadable.
-MSD