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Daily Beast: Interview with Mikovits who tells her side of events...

Mula

Senior Member
Messages
131
Agreed. But. We should remember I think that the Lombardi paper claimed to have found XMRV present in healthy controls too. This meant that XMRV become more than ME. So I was not at all surprised to see funding directed in this way, and so long as the studies included 'CFS' in their title it would be classed as 'CFS' funding. What I mean is that this increased funding may legitimately be reduced once the Lipkin Study is concluded unless of course he endorses the findings and especially if he alleges the presence of XMRV/MLVs in controls.

If the connection to CFS is broken then these funds could then 'revert' to other places. Indeed I wouldn't be surprised if these were some sort of emergency funds and not necessarily an increase in CFS funding per se. What I mean is that perhaps we shouldn't view these additional funds as for 'CFS Research' as we do other studies. They might be best considered a 'one-off'.

Thanks for the article Jennie and for the accumulated piece on the Lipkin Study. Very useful.

A retrovirus present in healthy controls could be a indication that only a percentage of infected progress to a disease state, and/or there is a period of infection before progression to disease.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
What is amazing to me, if this account is accurate, is that Judy Mikovits would have waited until July 2011 to pore through those notebooks looking for possible sources of contamination. Granted, in July 2011 the Ila Singh study was published, which went into some detail about the problems of contamination they had had, and which was a serious attempt to corraborate the WPI findings. Maybe that was the impetus. But it seems incredible to me that with all the controversy about possible contamination prior to that, like the 4 Retrovirology papers, that they wouldn't have closely reviewed their records sooner for any possible source of contamination.

BTW, the Daily Beast article has been revised so that it now says "an entry from March 2009 indicating that a culture of the XMRV virus had been placed into the same incubator with the rest of the lab’s blood samples," not ice chest.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
BTW, the Daily Beast article has been revised so that it now says "an entry from March 2009 indicating that a culture of the XMRV virus had been placed into the same incubator with the rest of the lab’s blood samples," not ice chest.

Thanks for that ixchelkali. I'm not sure if this throws any more like on the potential damage this could have caused, but I guess someone decided it needed to be more specific and I assume accurate. Little doubt in my mind this happened in Mikovits' lab of course - though others I have seen appear to question if this wasn't referring to the VIPdx lab.

I do wonder why such a seemingly benign entry was ever made in a journal/diary and who actually made it? Doesn't it seem strange to record the location of things each time you move them? Maybe it was a stock-take or perhaps it's a case of being thorough I don't know - I've never worked in a lab - but after all the denials and protestations and despite this degree of thorough and detailed record-keeping - they didn't realise (as you say) until a review of the notes in July last year?! It does appear quite remarkable.

As does Mikovits being absent on the day this occurred, implying no knowledge on her part of course and the further implication that it wouldn't have happened on her watch - so to speak. Still after all is said and done - and whilst this could indicate more than one 'breach' - it is only a possible source of contamination.
 

Mula

Senior Member
Messages
131
Thanks for that ixchelkali. I'm not sure if this throws any more like on the potential damage this could have caused, but I guess someone decided it needed to be more specific and I assume accurate. Little doubt in my mind this happened in Mikovits' lab of course - though others I have seen appear to question if this wasn't referring to the VIPdx lab.

I do wonder why such a seemingly benign entry was ever made in a journal/diary and who actually made it? Doesn't it seem strange to record the location of things each time you move them? Maybe it was a stock-take or perhaps it's a case of being thorough I don't know - I've never worked in a lab - but after all the denials and protestations and despite this degree of thorough and detailed record-keeping - they didn't realise (as you say) until a review of the notes in July last year?! It does appear quite remarkable.

As does Mikovits being absent on the day this occurred, implying no knowledge on her part of course and the further implication that it wouldn't have happened on her watch - so to speak. Still after all is said and done - and whilst this could indicate more than one 'breach' - it is only a possible source of contamination.

I see nothing unusal in this, record keeping would be required by all lab members and for all procedures. Although a source may be located and is present in the labs of others who have concluded they detected contamination, it still remains that contamination was never discovered within any samples from the initial paper or later confirmations.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I see nothing unusal in this, record keeping would be required by all lab members and for all procedures. Although a source may be located and is present in the labs of others who have concluded they detected contamination, it still remains that contamination was never discovered within any samples from the initial paper or later confirmations.

I meant: is it standard practice to record exactly where each thing was placed i.e. in the fridge? I have no experience of laboratory procedure. We have heard a great deal about the importance (presumed) of these 'notebooks' and I was questioning the level of detail. I mean to me - a layman - recording where things were in a fridge appears overkill. And if you did do such a thing, would you not also have known NOT where to place them?

You other point is true. And even a suspected source of contamination is only suspected. However, the way this game has progressed - that mere suspicion - when none has apparently existed before now (has been strongly denied) - is I would argue enough.

Personally, I would be asking, what the contamination was exactly. Because there were certain things that were always vehemently denied as ever ever ever having been in that lab. Although, once again, this could all have been the result of incorrect interpretation, forum misdirection and wholesale belief in the 'sterile' nature of MIkovits' lab and that nothing there could ever have gone wrong.

You know Mula one of the things that really turned me off the Lombardi paper, was all this denial. Not about contaminants, but a complete denial that nothing could possibly have been wrong with either the paper itself or with what occurred in the lab - let alone with those damn commercial 'tests'.
 

Mula

Senior Member
Messages
131
I meant: is it standard practice to record exactly where each thing was placed i.e. in the fridge? I have no experience of laboratory procedure. We have heard a great deal about the importance (presumed) of these 'notebooks' and I was questioning the level of detail. I mean to me - a layman - recording where things were in a fridge appears overkill. And if you did do such a thing, would you not also have known NOT where to place them?

You other point is true. And even a suspected source of contamination is only suspected. However, the way this game has progressed - that mere suspicion - when none has apparently existed before now (has been strongly denied) - is I would argue enough.

Personally, I would be asking, what the contamination was exactly. Because there were certain things that were always vehemently denied as ever ever ever having been in that lab. Although, once again, this could all have been the result of incorrect interpretation, forum misdirection and wholesale belief in the 'sterile' nature of MIkovits' lab and that nothing there could ever have gone wrong.

You know Mula one of the things that really turned me off the Lombardi paper, was all this denial. Not about contaminants, but a complete denial that nothing could possibly have been wrong with either the paper itself or with what occurred in the lab - let alone with those damn commercial 'tests'.

This level of detail would not be viewed as unusual as it can then be useful for troubleshooting.

“She must have copies of the records of her work. Every scientist must have those. Otherwise, you can’t answer questions that might come up,” says Ian Lipkin, an epidemiologist at Columbia University.

I haven't read any remarks denying any possibility?
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I guess what I mean is there was no acceptance or at least thought expressed that the hypothesis could be wrong, or not complete or that the experiments themselves could likewise have not been as thorough as was thought. That 'we are right' and 'you all are wrong'. Everything we had from, well, it was always Mikovits really wasn't it, just kept up a solid wall of indifference to others opinions. And there was a lot of public coverage from meetings and the like - as well of course of the tour and fundraising...
 

Mula

Senior Member
Messages
131
I guess what I mean is there was no acceptance or at least thought expressed that the hypothesis could be wrong, or not complete or that the experiments themselves could likewise have not been as thorough as was thought. That 'we are right' and 'you all are wrong'. Everything we had from, well, it was always Mikovits really wasn't it, just kept up a solid wall of indifference to others opinions. And there was a lot of public coverage from meetings and the like - as well of course of the tour and fundraising...

I have seen her express these concerns in lectures and they are written into her published literature. Do you expect a person to drop a line of inquiry on a whim to satisfy objections as to the results that she obtained?

Have you ever met a American scientist who didn't fund raise?
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Not on a 'whim' no. But she was adamant that she was right. And her supporters continue to believe this. The burden of proof remains hers alone. If anything left in that paper is deemed to still support the original finding that XMRV is associated with ME - then she should be the one to complete and publish better research. She hasn't. It isn't.

Later attempts to suggest that it was not XMRV but something else actually undermine her own efforts and the Lombardi et al paper itself. All I have ever asked for is a published paper and for less 'talk'.

I have never met an American scientist. But fundraising on the back of speculation and fear appears wrong to me especially when there were challenges being made to the research findings and even when there wasn't, rather than promote the paper itself she sought - in that first televised interview - to talk about e.g. autism and unproven unsubstantiated and unpublished links.

And latterly when the challenges came flooding in, we either had more of the same, taken up by 'advocates', or a shifting of the blame to other 'more likely' viruses. Or silence.

As I have said before, when she said what she did about the Lipkin study, I finally thought she had got the message. You know the 'definitive' comment? We will have to wait and see. But this will be the second large scale study that she has been involved with.

And I doubt very much if it will satisfy those who are convinced of some retroviral aetiology whatever the results and methodology actually are. But it will be very interesting to see if Mikovits is willing to comment any more than she has been of late and what form those comments will take.
 

Mula

Senior Member
Messages
131
A person is acting reasonably if the veracity of their experiments persist. This burden could potentially stay with a scientist for years, but this doesn't mitigate the burden for others. The sequences and antibodies that came from the experiments of interest to us are tangible. They have been described as "closely related to known polytropic MLVs.". http://okeefe-lab.blogspot.co.uk/2012/07/new-study-finds-low-levels-of-mlv-gag.html
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Firestormm,

Sometimes when I read your postings it feels like you have forgotten what has happened since the Science paper has been released to Dr Mikovits. I'm also reminded that you were not a member of this thread way back when it started and you haven't experienced the XMRV saga from the start.

Dr Mikovits began to say quite early on (for those of us who were there at the start and all the way since then) that she was finding it hard to get papers published. We don't know why that it. Maybe her collaberators were not happy with the "pay to publish" ones or was that avenue closed to her as well. We don't know what happened but given what Dr Mikovits has been through my feeling is that we need to judge her less harshly and more realistically

We asked her questions from the start and spoke to her at conferences and by email. You missed out on this early involvement.

It doesn't mean that your views or opinions are any less valid that those who were there from the start. Far from it. It does feel however that some of your comments could have been addressed to Dr Mikovits early on like many of us did.

When I spoke to both Dr Mikovits and some of her collaborators at the start they were very concerned that the Science results would be brushed aside as contamination. That's why they went to such great lengths to rule that out and great lengths to comment on it.

Before they Science paper was published they were looking for contamination in any way that they could using the best methods available to them. It was an important consideration. It was something to be loud and be clear on. It still is something to be loud and clear on.

It feels as if you are judging this from a distance sometimes and also that you are making heavy judgements of Dr Mikovits that are beyond what any scientist could deliver given the circumstances.

Please consider this - how many other XMRV or even retroviral scientists have been thrown in jail during the last few years. Let's do that to a few more and see how they come out of it as people, let alone judge their ability to produce good science or have a career after that?

Then we'll have them in an awful legal dispute on top of that. Take their laboratory away from them. Let's see how many papers that they get published.

Dr Mikovits was in dispute with the Whittemores, then thrown into jail and muzzled. That take a toll on a person. It's not an atmosphere for a scientist to be able to thrive in and produce results - any person would find that hard.

I'd like to see more about the science behind MLV's and humans and less personal attacks on Dr Mikovits.

You say that she kept up a solid wall against other's opinion but where is your evidence? I've spoken to her direct and not found her at all like that. We talked through alternative ideas and she'e been corresponding freely with patients since the Science paper.

My objective since the first hint of a retrovirus was discovered in CFS patients in the 80's was to know if this is true or untrue. Just wish that more retrovirilogists shared this desire.
 

JT1024

Senior Member
Messages
582
Location
Massachusetts
Hey Firestormm,

I don't have time to keep up with all the threads/discussions on the various forums never mind keeping up with the science. What I do have is clinical laboratory education and experience as well as business experience. I've also been following the science from October 2009. That said, I do have a clue of what goes on in labs and what can happen.

The findings by Dr. Judy Mikovits were mind blowing at the time and they are still. The ramifications from the findings of Dr. Judy and Dr. Silverman from the Cleveland Clinic has thrown the biotech world (including vaccines/monoclonal antibody drug production/gene technology using retroviral vectors, etc) into a much needed review of what was known, what is now known (the existence of "adventitious viruses", recombinant viruses, etc), and how to keep the public safe as well as the biotechnology/vaccine/money machine safe.

As someone who performs diagnostic testing routinely, I know what it is like to be questioned about tests. I also know what it is like to stand alone and stand for the truth. Medicine is incredibly more complicated that anyone wants to admit (including researchers and physicians) and the more you know, the more you are aware of what you know, don't want to know, and what others don't know.

From what I've seen from Dr. Mikovits, she has done nothing but take a stand for her research and her beliefs. I commend her for it. It would be far easier for someone to run and hide but I value someone who is willing to take a stand and take naysayers on. She has paid dearly for standing by her findings. We ALL learn from our mistakes and hopefully from others. When people have a vested interest that is contrary to new findings, it seems they will fight to discredit new findings until they can no longer stand.

The general public is unaware of the magnitude of what was discovered in XMRV and they will remain ignorant since educating the public would be difficult given the science. Also, any realization of what has transpired would cause serious alarm. Anyone working in labs that may encounter XMRV or any other recombinant or adventitious agent hopefully has been educated to the risk associated with their employment. In the age of "universal" precautions in healthcare, I suspect many working in research are unaware of the true risks.

At my workplace, I have been known to say "Make My Day". I think Dr. Mikovits has the same mentality. The only problem is when the "moderators" of interactions have bias as was the case in the first XMRV State of Science conference in back in ?? 2010. Many of us viewed the event live via webcam and were in chat at the same time. The interference from the likes of Dr. Jonathan Stoye were obvious. Subsequent events also had parties with vested interests to negate XMRV/MLV findings (e.g Dr. Coffin).

IMHO, Dr. Mikovits is an exceptional scientist. ANY study that claims to be "definitive" PRIOR to the study flies in the face of the scientific process. No scientist is exempt from review or error.

What amazes me is how scientists whose studies have included "conclusions" that could not be drawn from the science presented in the paper have not been forced to retract conclusions and state them as opinions. Also, "conclusive evidence" from scientists whose cell lines were never validated cannot be held valid. Where are the retractions for those papers?

I think the research world is reeling from the knowledge that previously undetected viruses (in cell lines, possibly in vaccines, in reagents, in various tests, and potentially in humans) exist and pose a threat and may have already caused disease. A quick google search provided this link: http://www.thebulletin.org/web-edition/features/the-unacceptable-risks-of-man-made-pandemic

Sorry for the rambling....
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Thanks JT. I hope you are feeling somewhat recovered.

IMHO, Dr. Mikovits is an exceptional scientist. ANY study that claims to be "definitive" PRIOR to the study flies in the face of the scientific process. No scientist is exempt from review or error.

It was Mikovits herself that was quoted as saying the Lipkin study would be 'definitive' although I don't believe she might have meant it in the context it was given. Rather perhaps that it was the only large study remaining that she was involved with. I took this to read that she was endorsing the study.

As someone who works in labs JT what did you make of the diary review last July that spotted things being stored in the wrong receptacle? Is this the kind of detail that would routinely be recorded and then overlooked in a lab that was taking such care to prevent contamination? Or do you think that everyone (even Mikovits and her staff) underestimated the ability of XMRV to contaminate?

Whilst I do think that the Lombardi paper and the work previously by Silverman have served latterly to highlight the previously unknown ability for XMRV and MLVs more generally to contaminate - I don't believe Mikovits and her co-workers can possibly have done as much as was claimed to control for said contamination.

And all of this does not excuse what I have seen throughout as nothing but speculation and inciteful comments pertaining to the ability of XMRV to infect humans, inferring the cause of disease ranging from Autism to ME, the ability of XMRV to transmit by aerosol and sexually, and that a simple 'test' could better inform patients that they had or had not this retrovirus (not to mention the comments pertaining to possibly false-negatives).

Promote your research for sure but speculating beyond that paper was wrong IMO. Lombardi et al revealed an association. Nothing more nothing less. And nods towards a 'drawer full' of unpublished work (including from the get-go an autism paper) only served to aide the conspiracy-theorists.

And lest we forget. This 'interview' came at a time when people were saying she was 'still gagged'. Mikovits has been able to comment when she wanted to throughout this entire period. It was her own legal team providing the advice - if there was any.

People seem to admire even self-confessed 'mavericks' but I still maintain that she is her own worst enemy and hasn't done herself or science any favours by her behaviour.

I don't know what will become of her post-Lipkin. Part of me wants to see those supposed 'bottom-drawer' papers published if only to see how 'good' they really were; part of me hopes (as I would for all human-being's) that she gains some gainful employment - but a large part of me thinks that had she been a registered GP she would have rightfully been disciplined and lost her license to practice.

Unfortunately, science doesn't have such regulations. It seems to be that one's ability to publish directly relates to one's employability. She will have the Lipkin study I suppose. I for one will be very interested in what she has to say in support of it (or otherwise).
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Firestormm,

Sometimes when I read your postings it feels like you have forgotten what has happened since the Science paper has been released to Dr Mikovits. I'm also reminded that you were not a member of this thread way back when it started and you haven't experienced the XMRV saga from the start.

Dr Mikovits began to say quite early on (for those of us who were there at the start and all the way since then) that she was finding it hard to get papers published. We don't know why that it. Maybe her collaberators were not happy with the "pay to publish" ones or was that avenue closed to her as well. We don't know what happened but given what Dr Mikovits has been through my feeling is that we need to judge her less harshly and more realistically

We asked her questions from the start and spoke to her at conferences and by email. You missed out on this early involvement.

It doesn't mean that your views or opinions are any less valid that those who were there from the start. Far from it. It does feel however that some of your comments could have been addressed to Dr Mikovits early on like many of us did.

When I spoke to both Dr Mikovits and some of her collaborators at the start they were very concerned that the Science results would be brushed aside as contamination. That's why they went to such great lengths to rule that out and great lengths to comment on it.

Before they Science paper was published they were looking for contamination in any way that they could using the best methods available to them. It was an important consideration. It was something to be loud and be clear on. It still is something to be loud and clear on.

It feels as if you are judging this from a distance sometimes and also that you are making heavy judgements of Dr Mikovits that are beyond what any scientist could deliver given the circumstances.

Please consider this - how many other XMRV or even retroviral scientists have been thrown in jail during the last few years. Let's do that to a few more and see how they come out of it as people, let alone judge their ability to produce good science or have a career after that?

Then we'll have them in an awful legal dispute on top of that. Take their laboratory away from them. Let's see how many papers that they get published.

Dr Mikovits was in dispute with the Whittemores, then thrown into jail and muzzled. That take a toll on a person. It's not an atmosphere for a scientist to be able to thrive in and produce results - any person would find that hard.

I'd like to see more about the science behind MLV's and humans and less personal attacks on Dr Mikovits.

You say that she kept up a solid wall against other's opinion but where is your evidence? I've spoken to her direct and not found her at all like that. We talked through alternative ideas and she'e been corresponding freely with patients since the Science paper.

My objective since the first hint of a retrovirus was discovered in CFS patients in the 80's was to know if this is true or untrue. Just wish that more retrovirilogists shared this desire.

Hi UK,

You are right in at least one respect. I wasn't on PR back in 2009. I was around however, and was certainly following the conferences and things from 2010 onwards. Hell - who wasn't as much as they were able?
 

beaker

ME/cfs 1986
Messages
773
Location
USA

barbc56

Senior Member
Messages
3,657
Before they Science paper was published they were looking for contamination in any way that they could using the best methods available to them. It was an important consideration. It was something to be loud and be clear on. It still is something to be loud and clear on.

Looks like they forgot to look in the incubators. This information trumps what was said in the past, that contamination was not possible as they "looked" for it. Ila Singe took a long time to find the source of the contamination found before starting her study. Removing the contamination led to different results.

Even if the above occured after the study was completed, it shows how easily some things were possibly overlooked. This sometimes happens in an experiment but most scientist acknowledge this, possibly redo the experiment if there are funds and move on. Admitting a "mistake" in the scientific world, is not necessarily a negative. You at least learn from your mistakes and can sometimes provide valuable information.

The original Science study was not for nil. It has at least shown how easily contamination can occur. This is an important consideration in future studies and possibly looking back at other studies where contamination might be a factor.

I would ask people to read the interview and substitute another scientiest such as Lipkin, answering the questions. If you are honest with yourself, I would speculate that the interview would look suspecious.

There seems to be a double standard when it comes to comparing Mikovits's behavior and what is acceptable verses other scientist who have come to different conclusions.


Personal biased comes to mind, and scientist coming up with negative studies have been accused of this solely on the basis of the outcome of the experiment.

Barb C.:>)
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
When I spoke to both Dr Mikovits and some of her collaborators at the start they were very concerned that the Science results would be brushed aside as contamination. That's why they went to such great lengths to rule that out and great lengths to comment on it.

Before they Science paper was published they were looking for contamination in any way that they could using the best methods available to them. It was an important consideration. It was something to be loud and be clear on. It still is something to be loud and clear on.

I do remember that. That's why it seems odd to me that she says that in July 2011 she was poring over the lab notebooks looking for a possible source of contamination. And apparently did find at least one instance when samples and XMRV were together in the same lab. I guess I thought she would have checked that before she spoke out "loud and clear."
 

Mula

Senior Member
Messages
131
I do remember that. That's why it seems odd to me that she says that in July 2011 she was poring over the lab notebooks looking for a possible source of contamination. And apparently did find at least one instance when samples and XMRV were together in the same lab. I guess I thought she would have checked that before she spoke out "loud and clear."

The research laboratories had performed testing for contamination and permitted others to use their preferred tests on samples all without success. This entry is not a test that has determined contamination but appear to be a source which may be able to contaminate and the samples by all accounts somehow relate to the Redlabs tests and not research. Making any other suggestion is speculation, which some find uncomfortable even if this is an approach practiced by all authors working in this field and everyone here.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
As someone who performs diagnostic testing routinely, I know what it is like to be questioned about tests. I also know what it is like to stand alone and stand for the truth. Medicine is incredibly more complicated that anyone wants to admit (including researchers and physicians) and the more you know, the more you are aware of what you know, don't want to know, and what others don't know.

Hi JT1024, this observation about what you know, and what you don't know, is true for most of science - even in computing technology. Medicine is just a more complex and difficult subject - its even easier to get lost in. Bye, Alex