XMRV & Blood Supply Webinar Tuesday, Mar 29

Riley

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But didn't we hear that there was going to be a major publication of new research in April? And that they had all signed non-disclosure agreements until then?
It is currently just hearsay and speculation, but there are whispers emanating from several sources to that effect. Is there a paper? Will it be definitive? We just don't know.
 

LJS

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This information from Judy only highlights the cover up, why else would confirming studies go unpublished while bad science negative studies get fast tracted? This should prove we need to be more vocal, more active in calling for true science and research. Staying quiet will only get us 30 more years of CBT and GET. The government is far from giving up, my guess is we'll see a bunch more of zero/zero and negative studies flood publications in the next few weeks........funny how that happens everytime news of confirming data shows up in the media. I'll throw this out there again, does anyone think we'll see any of Judy's work published in 2011?
It is very frustrating to see people constantly preaching cover-up and conspiracy theories; I wish more people would stand up against it. It does nothing but damage the reputation of CFS patients and scares off reputable scientist from doing any CFS related research. What scientist would want to have their name on a publication studying a condition where the patients are in insisting conspiracy theories and a big cover up is to blame for their condition?

You may be able to make the argument for why some scientist may want to disprove XMRV but there is no way to discredit the large number of scientist who have not found it at this point. Plenty of them have legitimately tried and have failed to find XMRV with sound scientific practices. Why would someone not want to find XMRV, it would be a huge achievement since everyone else if having such problems with it. Just read the article a few days ago with Dr. Brent Satterfield of Cooperative Diagnostics, his best friend has CFS and he put a lot of resources and time into trying to find XMRV and really wanted to find it but always came up with nothing. He talks about how he hopes he is wrong but the science simply does not show that to be the case at this point.
 

LJS

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yeah I agree.....let's sit down and be quiet for another 30 years, it's worked pretty well for us so far.
You don't have to sit down and be quite. There are plenty of ways of raising awareness and advocacy that do not involve conspiracy and cover-up theories. Its about bringing people to work together for a cause not driving people away from us.
 

Riley

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You don't have to sit down and be quite. There are plenty of ways of raising awareness and advocacy that do not involve conspiracy and cover-up theories. Its about bringing people to work together for a cause not driving people away from us.
I totally agree. I know this is the Internet, But the conspiracy theories have gotten way out of hand.
 
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No conspiracy, here Just plain old human error discovered years later. http://www.retrovirology.com/content/6/1/86 Unintended spread of a biosafety level 2 recombinant retrovirus

From the paper: This hybrid amphotropic/Moloney murine leukemia virus was engineered in the 1980s [7,8] and neither the virus itself nor the plasmid (pAMS) containing its proviral genome were ever used in our laboratory. Although the precise source for the contamination could not be traced back, sharing cell lines with other laboratories seems the most likely explanation.
 

toddm1960

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So you really think we're in our current situation (no positive studies being published, and no funding for new research) because of people like Hillary Johnson? Hey everyone can have their own opinion, but if true, real science backs away from people fighting for their lives.........well we really are in a sad, sad state.
 

Cort

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So you really think we're in our current situation (no positive studies being published, and no funding for new research) because of people like Hillary Johnson? Hey everyone can have their own opinion, but if true, real science backs away from people fighting for their lives.........well we really are in a sad, sad state.
I don't think that's happening. It's a tricky situation for sure. XMRV has gotten lots of funding...the WPI obviously has not. I think there's only a limited amount of influence they can have until XMRV is proven to be there by independent labs - until that point my guess is nothing they do with XMRV is going to accepted. (I except studies of genetic variability or studies of XMRV integration or other studies showing that XMRV is a real infection).

If XMRV is validated then everything they do should be accepted. I think they are kind of limbo...

Which positive studies are not being published? Anything using the WPI or the VIP Dx probably wouldn't be...On the other hand I don't understand why the NCI study is not being published - altho I have been told that journals are very wary about publishing something they think will be overturned. It could be that they are waiting for more definitive evidence (Genetic variability, DNA integration....) before they will publish studies showing XMRV is present..

Do we know how many positive studies have not been published and what they are on?

On the other hand - I think everything really rests on the BWG and Lipkin and the other studies going on.

That is, unless there is some breakthrough that will explain things that pops up - as Dr. Mikovits intimates.
 

currer

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I cannot find Dr. mikovits talk at NYAS anywhere on the web.
Can anyone get it?
Does anyone know why it has become unavailable?
 

Waverunner

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It is very frustrating to see people constantly preaching cover-up and conspiracy theories; I wish more people would stand up against it. It does nothing but damage the reputation of CFS patients and scares off reputable scientist from doing any CFS related research. What scientist would want to have their name on a publication studying a condition where the patients are in insisting conspiracy theories and a big cover up is to blame for their condition?

You may be able to make the argument for why some scientist may want to disprove XMRV but there is no way to discredit the large number of scientist who have not found it at this point. Plenty of them have legitimately tried and have failed to find XMRV with sound scientific practices. Why would someone not want to find XMRV, it would be a huge achievement since everyone else if having such problems with it. Just read the article a few days ago with Dr. Brent Satterfield of Cooperative Diagnostics, his best friend has CFS and he put a lot of resources and time into trying to find XMRV and really wanted to find it but always came up with nothing. He talks about how he hopes he is wrong but the science simply does not show that to be the case at this point.
I agree to 100%.
 

asleep

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Cort, as is par for the course with your posts, this one is yet another clown car packed full of fallacies, misinformation, and fanciful reinterpretations of reality.

If XMRV is validated then everything they do should be accepted. I think they are kind of limbo...
Let's break this down. Sounds innocent and objective, right?

Firstly, the phrase "if XMRV is validated" is a sneaky way of casually and uncritically dismissing the large body of evidence supporting XMRV: Alter study, macaque study, XMRV in respiratory secretions, prostate cancer integration, serology, viral proteins, etc.

Harvey Alter himself stated that his study "validated" the WPIs work. Yet, in a mere four words, you have not only discounted his statement but also re-framed reality to exclude all of the supporting evidence.

Secondly, your statement belies a false view of "validation" as a binary state that either exists or doesn't exist. In reality, though, "validation" is a sliding curve that accounts for the weight of overall evidence.

This is important to understand because it is part of what powers your egregious and misleading dismissal of supporting evidence. Only by positing "validation" as some ephemeral on/off state can you successfully frame evidence out of the picture.

In essence, you imply that each study is an island that either clicks us into "validation" or not. If it doesn't, then it is discounted in your view. The reality, though, is that all of the studies taken together slide us further toward or away from "validation." There is no magic study that decides all. You have made "validation" into a scientific Godot.

...altho I have been told that journals are very wary about publishing something they think will be overturned. It could be that they are waiting for more definitive evidence (Genetic variability, DNA integration....) before they will publish studies showing XMRV is present..
So your "sources" (unnamed of course) claim that journals are making publication decisions based not on peer-review of a paper's evidence but instead on speculation about future findings?

If this is true, this is a perversion of the scientific spirit: the potential overturning of evidence is the precise reason it should be published. That is how science operates. Evidence is put forward and challenged.

Furthermore, this creates a catch-22: no one will publish evidence in support of XMRV because it might be dis-proven, yet XMRV will always appear likely to be dis-proven if no on publishes supporting evidence. This is a nice little system for ensuring that certain discoveries never gain scientific traction.

Cort, the fact that you blithely and uncritically accept this state of affairs says a great deal about your position on XMRV and your understanding of how the scientific process should operate.
 

Cort

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I think something has been missed in Dr. Mikovits Talk. I think she actually presents a pretty compelling bit of evidence that however XMRV came about it that it really has infected the patients who's samples the WPI has tested.

XMRV has alot of issues right now - but her idea seems solid to me. Check out the signature section.

From the XMRV Buzz (not out yet)

Dr. Mikovits slides clearly state that XMRV is not an endogenous retrovirus but a new human virus but there appears to be a little twist (?) as one of her opening slides now states that How XMRV got into humans is unclear (or did I just not pick that up before?). The slides quickly move from the opening paper to the Lo study, noting besides its results, that they have been unable to produce evidence of an infectious virus. (That, of course, is what we believe they are trying to do now either by growing the virus or showing that it is integrated into human DNA.)

Genetic Variability Then comes genetic variability a very important topic at the moment, The Lombardi paper stated that the gag sequences were basically identical to each other and to all published samples but here Dr. Mikovits states that further analysis shows more variability and in the next slide she shows how the same patient can have more than 1 XMRV infection; one of which was not picked up by the first PCR assay. Alex notes that 30% of ME/CFS patients have more than one strain.

Finding A Signature of Infection - Then she presents a simple but seemingly compelling answer to the contamination question. Researchers know that the APOBEC enzymes in human B and T-cells switch out amino acids in XMRV rendering it unable to replicate (in T-cells). Right now a good chunk of researchers appear to believe that XMRV is a laboratory creation that got into human samples but not humans. Geneticists are arguing that low variability in XMRV indicates it is not in humansbut what about a more direct measure? What about showing that the XMRV in your sample bears evidence of being altered by human enzymes..ie the APOBEC enzymes?

Finding sequences that are consonant with APOBEC editing is like picking up a signature indicating that XMRV has been in a human body. In the next slide she shows evidence of just that; hypermutation of XMRV sequences found in B-cells taken from human samples.! Dr. Mikovits focused on APOBEC editing almost a year ago noting that Grooms finding that such was going on enabled them to adjust their testing to better pick up XMRV. There are so many factors in XMRV that its hard to know how any one will play out but on the face of it makes sense that any XMRV that shows evidence of APOBEC editing should have infected humans at one time. It appears to be a strong argument that XMRV she has found has infected humans.

Then she shows that B-cell lines in humans can carry versions of XMRV that have been altered but can still replicate. Thats a big deal because other than the prostate nobodies been able to show a place where XMRV replicates. Its also intriguing given the fact that EBV replicates in these cells as well and with the interesting study on Rituxumab (B-cell inhibitor) going on in Norway.

She then states that the challenge is to develop assays that can pick up all strains of XMRV. Of course the big problem is for the WPI has been other researchers almost complete inability to pick up the first strain the one the WPI readily found in their original study. If the research world could find THAT strain they would be surely look for other strains.

Satterfield argues that recent assays should be picking up more strains of XMRV and MLVs than ever. In an interview he notes researchers have antibodies to every protein and because of that they should be finding more strains of XMRV and a higher prevalence of XMRV than the Lomdardi study did. The most basic problem remains the inability of independent labs to find XMRV at all.

On the other hand its hard, at least for this laymen, to argue against Dr. Mikovits finding of a signature of human infection in her samples.:)

Antibodies - The next couple of slides show that antibodies to a variety of MLV protein detect XMRV something some studies disagree with. Later studies, of course, are using antibodies to XMRV not to MLVs; two recent studies have not found antibodies to XMRV itself in people with CFS. On the next series of slides Dr. Mikovits points to new XMRV specific antibody tests under development and the detection of XMRV in a number of patients with cancer (leukemia, lymphoma) and blood borne diseases. She also reported that their new culture tests are much quicker (4-18 days vs 21-42 days)than their old ones and discussed the DERSE test and the INTERCEPT virus removal system for the blood.

Alexs Overview - In his overview Alex notes that Dr. Mikovits has found high levels of viral proteins in patients.

Alex added a number of interesting points:

  • All 60 cell lines at the WPI have been tested for XMRV and are not contaminated.
  • Patient contacts including caretakers have higher risk of XMRV so this might be considered as a screening criteria for blood donations.
  • A question about XMRV transmission noted that an implication of CROI is that XMRV might be airborne. This is being investigated, but is not proven.
  • Mikovits is talking to Dr. Lerner about XMRV and herpes virus interactions. (No surprise there given the finding that XMRV is in B-cells. ?)
  • Mikovits describes ME/CFS as an Acquired Immune Deficiency.
  • A new high security lab may enable research they have not been able to do so far.
  • It was confirmed that Chronix have indeed claimed to have found fully integrated XMRV in ME/CFS, including flanking DNA on both sides of the virus.
  • Pathogenicity is not proven. However, it is suspected that antivirual methylation might be removed by epigenetic factors including those induced by the virus itself.
 

Sasha

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[From Alex's overview] It was confirmed that Chronix have indeed claimed to have found fully integrated XMRV in ME/CFS, including flanking DNA on both sides of the virus.
I thought this was being touted as a sort of holy grail that if found, would knock off the contamination argument and here it is. I wonder if it's in press?

It's a bit of a weird situation where nothing can get published until everything gets sorted out. Normally, it's publishing everything that gets everything sorted out! Perhaps it is that things are just too fast-moving and people are waiting for the BWG study.
 

WillowJ

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It's a bit of a weird situation where nothing can get published until everything gets sorted out. Normally, it's publishing everything that gets everything sorted out!
yes, that's very strange; they should be letting things through to get sorted out in the journals. This "that should never have been published because of what we learned later" line is not scientific.
 

shannah

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I cannot find Dr. mikovits talk at NYAS anywhere on the web.
Can anyone get it?
Does anyone know why it has become unavailable?
Pathogens in the Blood Supply youtube videos deleted
by XMRV Global Action on Friday, April 1, 2011 at 1:51pm.

We deleted the videos after receiving the following message this morning:

PLEASE NOTE: these videos have been posted without the permission of the New York Academy of Sciences, and we have requested formally that they be removed. Dr Mikovits' full presentation will be available soon on the Academy's website as an online 'eBriefing', and all who registered to attend will be alerted at that time.





.
 

ixchelkali

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Pathogens in the Blood Supply youtube videos deleted
by XMRV Global Action on Friday, April 1, 2011 at 1:51pm.

We deleted the videos after receiving the following message this morning:

PLEASE NOTE: these videos have been posted without the permission of the New York Academy of Sciences, and we have requested formally that they be removed. Dr Mikovits' full presentation will be available soon on the Academy's website as an online 'eBriefing', and all who registered to attend will be alerted at that time.


.
Thank you for posting this explanation. I had looked at the NYAS website I couldn't find any indication of whether it would be available. I'll just wait patiently then.

I just checked the NYAS website and the registration for that event is now closed, so I guess only those who preregistered will be able to see it.
 
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It is very frustrating to see people constantly preaching cover-up and conspiracy theories; I wish more people would stand up against it. It does nothing but damage the reputation of CFS patients and scares off reputable scientist from doing any CFS related research. What scientist would want to have their name on a publication studying a condition where the patients are in insisting conspiracy theories and a big cover up is to blame for their condition?

You may be able to make the argument for why some scientist may want to disprove XMRV but there is no way to discredit the large number of scientist who have not found it at this point. Plenty of them have legitimately tried and have failed to find XMRV with sound scientific practices. Why would someone not want to find XMRV, it would be a huge achievement since everyone else if having such problems with it. Just read the article a few days ago with Dr. Brent Satterfield of Cooperative Diagnostics, his best friend has CFS and he put a lot of resources and time into trying to find XMRV and really wanted to find it but always came up with nothing. He talks about how he hopes he is wrong but the science simply does not show that to be the case at this point.
I've been posting some stuff lately about conspriracy theories. I will try and back off for awhile, or keep it contained to threads I create with a warning label.

However, talking about CFS and not talking about conspiracy theories is kind of like talking about CFS without talking about XMRV in my opinion.

Pretty obvious there has been monkey business on the part of the CDC and other governments with their psychobabble and everything else. To me that is a conspriracy theory. For the CDC/MRC to release the psychobabble research (that we complain about here on a daily basis), while ignoring biological research for all these years is a major conspiracy. Beyond me how everybody can't see that part.

So yep, it is a conspiracy and to me is fascinating. However, I realize many folks somehow believe the science should change the mind of the agency making all the rules to the game.

By the way, sure many people at the CDC have no idea they are being manipulated.
 

floydguy

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It does nothing but damage the reputation of CFS patients and scares off reputable scientist from doing any CFS related research. What scientist would want to have their name on a publication studying a condition where the patients are in insisting conspiracy theories and a big cover up is to blame for their condition?
Sounds like a conspiracy theory to me so I'll stand up to it. Where is there proof that scientists have disregarded their institutions' instructions to conduct CFS research? Or have given up research money on their own because of the scary CFS patient population? Yes, there is a pathetic amount of research done on CFS but to blame it on the patients themselves I think is ridiculous. Don't you think it probably has more to do with the fact there is no money available for research? I don't think that the NIH, CDC, et al are holding back funding due to the fact that many of us think that there is a flying saucer stored under Groom Lake, NV.
 

justinreilly

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Thank you for posting this explanation. I had looked at the NYAS website I couldn't find any indication of whether it would be available. I'll just wait patiently then.

I just checked the NYAS website and the registration for that event is now closed, so I guess only those who preregistered will be able to see it.
That's annoying of them. Can someone post the link here to the vid on the NYAS website when they are alerted so I can see if i can watch it.