You can view the page at http://forums.phoenixrising.me/content.php?418-Singh-XMRV-CFS-Study-Strikes-Out
Posted on VR's blog today:
"After the recent publication by Ila Singh on XMRV in CFS patients, Dr. Lipkin sent me the following note:
Dear Vince-
We have a plethora of explanations for how CFS/XMRV/MLV studies could go awry. However, we dont have evidence that they have. Absent an appropriately powered study representing blinded analyses by Mikovitz and Lo/Alter of samples from well characterized subjects using their reagents, protocols and people, all we have is more confusion.
I remain agnostic. We wont have answers until the end of 2011.
The NIH will post something on our study today.
Ian"
http://www.virology.ws/2011/05/06/i...m_campaign=Feed:+VirologyBlog+(virology+blog)
Posted on VR's blog today:
"After the recent publication by Ila Singh on XMRV in CFS patients, Dr. Lipkin sent me the following note:
Dear Vince-
We have a plethora of explanations for how CFS/XMRV/MLV studies could go awry. However, we dont have evidence that they have. Absent an appropriately powered study representing blinded analyses by Mikovitz and Lo/Alter of samples from well characterized subjects using their reagents, protocols and people, all we have is more confusion.
I remain agnostic. We wont have answers until the end of 2011.
The NIH will post something on our study today.
Ian"
http://www.virology.ws/2011/05/06/i...m_campaign=Feed:+VirologyBlog+(virology+blog)
He is saying that it is up to Mikovits and Alter to repeat their studies in an appropriately powered manner to resolve the issue. I'm not sure that will happen.
I really, really hope the WPI has done fully blinded re-tests using freshly collected samples from patients and most importantly healthy controls. I also hope they would be willing or able to admit they are wrong if they discover they made a mistake. They are at or past the point where they can admit they are wrong or that it is was a lab contaminate without looking incompetent. I know these statements will spark emotions here but Dr. Mikovits needs to take the contamination possibility seriously for her own reputation sake and address the problems other has risen with her data in a calm cool collected manor presenting science to back it up. The WPI has jumped from one explanation to another for why others are not finding it, enough with the excuses, there are better ways to handle this then just blaming and attacking everyone who can not find it. Enough is enough, this is damaging to the reputation of CFS to those we need the most at this point, researchers and doctors. I see scientist blogs discussing CFS and XMRV like Professor Racaniello filled with comments from CFS patients attacking anyone and everything that disagrees that XMRV is present in CFS patients. This is helping no one and closing doors we need to keep open.
I think you're mixing apples and oranges. Whether or not someone has been able to find XMRV or not doesn't have anything I can think of to do with their knowledge of cross-reactivity?
Satterfield is one of the few professionals in the field that is willing to talk about these issues. He's not necessarily special but he is someone who makes his living running a diagnostic lab - so I think his opinion, given that we have so few from the professional arena, is worth listening to.
(Right now with 26 studies unable to find XMRV he's actually in the majority....)
Today I'm feeling grateful that the authors of this study put so much time and effort and care into it. I'm grateful that they are taking CFS seriously enough to study it.
Whether XMRV turns out to be related to CFS or not, I'm grateful to Judy Mikovits for her courage in proposing this idea. It was a bold move. I appreciate that she is working so hard to try to solve the puzzle of our disease.
I'm grateful to Ian Lipkin and Alter and Lo and Ruscetti and all the other scientists who are looking into physical causes of CFS.
I hope we are now out of the dark ages of CFS and are permanently in an era of improved research and attention and funding and effort to help us.
No matter what happens with XMRV, I still believe that the WPI is one of our best hopes for finding solutions.
"XMRV is not associated with ME, comprehensive study finds." This headline of the U of Utah press release is what 99.5% of people will come away with when they see this headline and story in the news. More warping of the science.
I'm not saying Singh had to look at it in tissue in this study if she hadn't planned to do that, but how can she say that 'XMRV is not associated with CFS" just based on the blood? That seems disingenuous to me. She should have just said she couldn't find it in ME blood. It's possible it's in tissues and not blood.
In the monkey xmrv study, the blood of the monkeys who were infected with xmrv didn't always test positive for XMRV, but when they did autopsies they found the organs had a good deal of XMRV. Similarly, when Prof. Singh tested prostate tissue, controls were 4% positive; but when she only tested blood, in the present study, she found 0%. So how can she say flatly in the study and the title of the press release that XMRV is not associated with ME? I think the most she can say is that she didn't find xmrv in the blood of patients or controls.
Apparently, one of WPI's positives they sent to Singh was one they used to grow a cell-line/strain from and they also took an electronmicrograph of XMRV coming out of a cell in this person's blood (in addition to finding it positive with some of the four or five tests WPI used). So it's possible that that sample is in fact positive and Singh couldn't find the XMRV. So, again, it's disingenuous to say "XMRV is not associated with ME" when we don't know that for sure. All we know for sure from her study is that she did not detect XMRV in any of the samples.
"XMRV is not associated with ME, comprehensive study finds." This headline of the U of Utah press release is what 99.5% of people will come away with when they see this headline and story in the news. More warping of the science.
I'm not saying Singh had to look at it in tissue in this study if she hadn't planned to do that, but how can she say that 'XMRV is not associated with CFS" just based on the blood? That seems disingenuous to me. She should have just said she couldn't find it in ME blood. It's possible it's in tissues and not blood.
In the monkey xmrv study, the blood of the monkeys who were infected with xmrv didn't always test positive for XMRV, but when they did autopsies they found the organs had a good deal of XMRV. Similarly, when Prof. Singh tested prostate tissue, controls were 4% positive; but when she only tested blood, in the present study, she found 0%. So how can she say flatly in the study and the title of the press release that XMRV is not associated with ME? I think the most she can say is that she didn't find xmrv in the blood of patients or controls.
Apparently, one of WPI's positives they sent to Singh was one they used to grow a cell-line/strain from and they also took an electronmicrograph of XMRV coming out of a cell in this person's blood (in addition to finding it positive with some of the four or five tests WPI used). So it's possible that that sample is in fact positive and Singh couldn't find the XMRV. So, again, it's disingenuous to say "XMRV is not associated with ME" when we don't know that for sure. All we know for sure from her study is that she did not detect XMRV in any of the samples.
I think that headline is accurate - based on what they said in the study. They actually didn't say XMRV is not associated with CFS; they said 'they feel that' XMRV is not associated with CFS.
I don't think any researchers are looking at tissue samples of people with ME/CFS and I would be surprised if they if f XMRV in the blood does not turn out to be associated with CFS. If it actually turns to to be true the link is gone; there would be no logical reason to look for XMRV in the tissues in CFS than in diabetes or asthma or whatever. I think you have to prove the blood link first.
Logically you're correct - you cannot say XMRV is not associated with CFS until you look at all the tissues - but you can say that about every pathogen. The question is whether its an important question? I don't think it is.
There's no reason to think XMRV is hiding away, undetectable in the blood but still virulent in the tissues of people with CFS. Remember the WPI was rather easily able to detect XMRV in the blood of ME/CFS patients in the Oct. study and has been able to do that since then - as has VIP Dx labs. They find it in the blood ALL THE TIME.
It's not as if XMRV somehow appeared in the blood of that first set of patients (and in all the people who have tested positive since then) by the WPI and then disappeared into the tissues of every other person with ME/CFS who tested negative in the other studies.
Nor is the WPI saying you have to search for it in the tissues - they are saying that we can find it in the blood, we find it in the blood every day and you - the negative studies are doing something wrong.
It'll be interesting to see what their response in the Journal is.
I think we're getting two issues muddled together.
There is the matter of replicating WPI's study, and then there's the matter of confirming whether XMRV plays a role in CFS. If the WPI is wrong and found an alarming rate of false positives (for the sake of argument), then why isn't it a worthwhile effort to look for it in biopsies? Based on the Emory study logic, isn't it more likely to be found there? Based on Singh's study finding it in both cancer patients and 4% of controls in prostate cancer tissue, don't we already have an assay that can be deployed on other types of tissue?
Your point about being not being able to confirm association before looking at all tissues for all pathogens is true, but it's also irrelevant since there is a precedence for it being found in biopsy samples by KDM.
I think that headline is accurate - based on what they said in the study. They actually didn't say XMRV is not associated with CFS; they said 'they feel that' XMRV is not associated with CFS.
I think we're getting two issues muddled together.
There is the matter of replicating WPI's study, and then there's the matter of confirming whether XMRV plays a role in CFS. If the WPI is wrong and found an alarming rate of false positives (for the sake of argument), then why isn't it a worthwhile effort to look for it in biopsies? Based on the Emory study logic, isn't it more likely to be found there?
Your point about being not being able to confirm association before looking at all tissues for all pathogens is true, but it's also irrelevant since there is a precedence for it being found in biopsy samples by KDM. I just hope he publishes the results of the biopsies soon, because we all know that without doing so, there will be no effort to "replicate" what isn't official.
How is the headline "XMRV is not associated with CFS, comprehensive study finds" accurate "based on what they said in the study" if in the study they "didn't say 'XMRV is not associated with CFS'..."?