Ruscetti Acknowledges Resuse of WB Image 2

[Bob]

but... I remember being a uni at having people trying to educate me about whatever political/social topic they thought demanded my attention when I just wanted to act a little concerned about that stuff, and then spend most of my time dancing! If you hold people to too high a standard, it can easily feel like baracking, even if that's not how it's intended, especially as all three of us suddenly started chirping on about it in unison. There are plenty of topics more important than PACE which I've not taken the time to educate myself about because of my own indifference and laziness, so one must be understanding when others are the same.

Fair points Esther. But my irritation comes from someone joining the forum to declare that the XMRV research is bad for ME patients, and that nothing Judy Mikovits has ever done can be trusted: "Nothing she has done, it is now clear, can be trusted." This is a rather premature statement to make, based on what we know so far. And it's not just premature - it's speculation based on a snippet of partial information. If people are so concerned about ME patients that they need to join the forum to tell us how angry they are, then I think it's quite OK for me to give them a bit of background information about ME, and to inform them why bashing Judy Mikovits is not at the top of my list of things to do right now. If someone thinks that all of our woes are as a result of Judy Mikovits, then they are entirely mistaken and misinformed, and I think it is really helpful to inform them why we have other bigger historic problems. Then they can do what they want with that information, and hopefully will use it constructively.

 

[FancyMyBlood]

@ ukxmrv:

Silverman? I think he showed definitively that the positive 'XMLV' PCR results were due to plasmid contamination, and confirmed that the early criticisms that the sequences were too similar to the plasmid, and didn't show enough sequence diversity, were correct.

I also think that his reported protections against contamination were stunningly thorough.

I also note that the contaminating plasmids were found in ME/CFS samples and not in healthy controls. This was the result that made me personally sit up and go 'hmmmm.' This is NOT a pattern that one sees with PCR contamination - this is a sample handling issue - at best, patient samples were handled differently from control samples, in a way that caused contamination of patient samples.

I think n evaluating the Silverman retraction, one must also look at JM's claimed ability to reliably find XMRV in patients and only at low levels in controls - and the fact that they were unable to do so when samples were blinded.

Put all this together, and the only conclusion I can find is that - AT BEST - JM's lab were guilty of handling patient samples differently from control samples, in ways that caused contamination of patient samples but not controls.

And given this - I don't believe a thing she has reported. She is - at best - too sloppy to be trusted.

Lee, I don't agree with your logic here. I agree that it is HIGHLY likely that XMRV is a contaminant, but you can't say you don't believe a thing Judy says just because she was 'sloppy'. Because with your logic you can't trust Silverman and the many other researchers either, who 'demonstrated' XMRV in prostate cancer.

 

[FancyMyBlood]

Lee, could you please respond to my earlier statement about PC research?

While I'm not a fan of J. Mikovits, especially her way of representing (unpublished) data I have a feeling you have a strong negative bias against her.

If you're going to condemn her about her sloppiness (and she can't be trusted because of that) you also have to acknowledge the sloppiness in PC research and ultimately acknowledge Sing, Klein and Silverman can't be trusted either. Your argument just doesn't stand. If you're going to condemn her about the many wrong statements she made in the past I fully agree, but cherry-picking a case of sloppiness is not fair if you're not going to acknowledge the mistakes of others too.

 

[Lee]

FancyMyBlood:

Yes, i have a negative bias against JM - the same negative bias i would have against any scientist who engages in the kind of misrepresentation of their work that JM and Ruscetti have admitted to and defended.

'Sloppy' doesn't necessarily mean bad science - although it is harder to do good science if one is sloppy with one's work - and one doesn't have to be sloppy to be wrong. Silverman did good work on RNase L and innate immunity, but it seems very likely that he was wrong about a retroviral association with prostate cancer. Being wrong doesn't make it bad science either. Silverman impressed me with the PCR contamination work. He stood up and said, 'hey, this stuff doest make sense,' did the careful work to show his earlier result was wrong, and why it was wrong, and retracted the incorrect result. THAT is good science.

He also documented the stunningly paranoid precautions he took to avoid contamination. Mikowits has blamed Silverman for the contamination, claiming it happened after she sent him the samples - I don't believe it.

Silverman's work showed that the contamination was widespread in patient samples, but none in healthy controls. The charitable explanation for this is sloppiness - that the patient and control samples were handled so differently that patient samples got contaminated while controls somehow were safe from contamination. The less charitable interpretation is intentional spiking, but there isn't evidence to support that strong a claim.

Against this backdrop of patient-specific contamination, there is the fact that JM was able to reliably get PCR positives from patients, and only low levels form controls as long as she knew which samples were patients and which were controls. When she was sent blinded samples, she still found positives -but they were equally split between patient and control. Again, the charitable interpretation is that the patient samples were handled differently from control, in a way that allowed contamination of patient samples. And that when she got blinded samples, she handled some of them the way she handled patient samples, and some the way she handled controls, so the contamination got into both sets.

Again, I'm being charitable.

But what she didn't do is what Silverman did - say 'hey, no on else is confirming our work, perhaps I should blind samples and check myself, and figure out what the issue is." It didn't get found out until blind samples were pushed on her from outside.

THAT is a problem, and that is the difference between how I perceive Silverman and Mikowits.

 

[leela]

Hey everyone, the larger context that is the groundwork for all the problems we face in research, medicine, science etc,
is being addressed here:

http://occupywallst.org/
occupytogether.org

you can watch livestreams and read about the 380 cities world wide that have now joined in protest at the criminal takeover
of wealth and power.

Pure science and people-centered medicine have long ago been unspeakably corrupted by the patent-driven, corporate-profit driven, for-profit health insurance system, which is the underlying context in all the argument on this and other threads.

The system is BROKEN and no matter which slide was which, or which data were correct, no progress can be made in a system that is
rigged in favor of a corporate or political agenda.

Go look at the beautiful thing that is happening in the world, with its epicenter at Liberty Square, and then give some thought to what we can do to fix a severely broken health care system, scientific process, financial system, and social structure for those thrown into need by health and other stressors.

 

[VillageLife]

I Really really hope scientists will review there me CFS samples using '5AZA' let's hope they find the
Gammaretroviruses!

 

[ixchelkali]

I can confirm the Gallo part. I asked him to his face what he thought of XMRV. He said he had an interest as he had had PC. He then went on to say that ME was more than likely psychosomatic. That answer bore no relation to the question.

He then got his wife to bump into me - in a crowd of hundreds - to establish my credentials.

This was not long after the Science paper, and I didn't know what to think. It makes more sense now.

I think Gallo would be dismissive of any discovery with Frank Ruscetti's name on it. They have a history. Come to think of it, I guess I'd have to say that I think Gallo would be dismissive of any retrovirology discovery that doesn't have his name on it, but especially one that Frank Ruscetti's involved with.

 

[ixchelkali]

@currer:

You should care - years or research and a lot of money, and a lot of invested hope from people who don't need to be misled, have now gone into ffollowing up that Science paper - which is falling to pieces.

That is not an 'orchestrated furore.' It is fundamentally bad science.

If you assume there was intentional fraud, then it would be bad science. If you assume that it was a good faith report of the discovery of a retrovirus in patient blood, which further research showed to be a hitherto unknown lab contaminant, then it was good science. That's the way science is supposed to work.

I fully support someone taking such an interest in ME/CFS because of knowing someone who has it. We could use more people like that. I don't mean to be unwelcoming when this is your first visit to the forum, but I hope you'll forgive me if I speak frankly: I'm suspicious of someone who posts here for the first time with such a detailed knowledge of the ins and outs of this issue. I can't help but question your motives and timing, and wonder about the person behind the anonymity of the Internet. You see, even though this is a patient forum (with friends and family of course welcome), it has sometimes happened that people have used that anonymity to influence patients' thinking or to promote an agenda that isn't necessarily what it appears, and not always in patients' best interests. And since some of those people have behaved in much the way you have, it makes me slow to embrace what you say at face value. If you're as savvy about the politics of ME/CFS as it appears, I'm sure you'll understand.

I think I'll wait until the publishers of Science announce the results of their investigation before I form any conclusions.

 

[Wayne]

You see, even though this is a patient forum (with friends and family of course welcome), it has sometimes happened that people have used that anonymity to influence patients' thinking or to promote an agenda that isn't necessarily what it appears, and not always in patients' best interests. And since some of those people have behaved in much the way you have, it makes me slow to embrace what you say at face value.

Well put Ixchelkali, my sentiments as well.

I've spent a fair amount of time tonight trying to understand some of what's transpired lately. I have no scientific research background whatsoever, so I don't even try to understand many of the technical arguments. But I do follow politics fairly closely, and watch how people sometimes use less than forthright methods when trying to influence other people. Fairly one-sided arguments make me especially suspicious.

My current take on things: Giant kudos to WPI and Judy Mikovitz for everything they have done on our behalf. Despite some apparent missteps on their parts, I think their intentions have always been good, and their efforts have given ME a lot of publicity. Some would argue it's mostly been bad publicity, but I have to disagree. I think more people than ever now believe there is a pathogenic cause to ME, primarily because of the articles generated by the original 2009 Science paper.

It appears both WPI and Judy Mikovitz have made mistakes. Some argue they were major, others argue they were minor. Either way, I would say it matters far, far less than the fact that there are apparently many things about the research results which are not so easy to scientifically dismiss. From what I can gather, many unanswered questions call for much more research, and need to be more fully explored (and probably will).

From my own perspective, so much of this controversy is far better than no controversy and/or no publicity at all. I've been dealing with pretty entrenched ME for almost 30 years, and the dearth of information and/or research during most of this time has been disheartening. Though the news of the past few days has been fairly disconcerting, to me its far preferable than no news at all. Personally, I have more confidence than ever that research will continue, and that breakthroughs will happen as a result.

Best, Wayne

 

[Enid]

I agree with you too Wayne - we have so much to be grateful for from the WPI and Judy Mikovits (whatever happened) in particular - raising the whole profile of the much misunderstood and often denigrated disease Myalgic Encephalomyelitis. Research all over has picked up - extent of pathologies found - probable involvement of enteroviruses/HGRVs etc. The mapping etc continues to pick up globally. And thanks to Judy Mikovits however unorthodox she may have been.

 

[FancyMyBlood]

@FancyMyBlood:

Yes, i have a negative bias against JM - the same negative bias i would have against any scientist who engages in the kind of misrepresentation of their work that JM and Ruscetti have admitted to and defended.

'Sloppy' doesn't necessarily mean bad science - although it is harder to do good science if one is sloppy with one's work - and one doesn't have to be sloppy to be wrong. Silverman did good work on RNase L and innate immunity, but it seems very likely that he was wrong about a retroviral association with prostate cancer. Being wrong doesn't make it bad science either. Silverman impressed me with the PCR contamination work. He stood up and said, 'hey, this stuff doest make sense,' did the careful work to show his earlier result was wrong, and why it was wrong, and retracted the incorrect result. THAT is good science.

He also documented the stunningly paranoid precautions he took to avoid contamination. Mikowits has blamed Silverman for the contamination, claiming it happened after she sent him the samples - I don't believe it.

Silverman's work showed that the contamination was widespread in patient samples, but none in healthy controls. The charitable explanation for this is sloppiness - that the patient and control samples were handled so differently that patient samples got contaminated while controls somehow were safe from contamination. The less charitable interpretation is intentional spiking, but there isn't evidence to support that strong a claim.

Against this backdrop of patient-specific contamination, there is the fact that JM was able to reliably get PCR positives from patients, and only low levels form controls as long as she knew which samples were patients and which were controls. When she was sent blinded samples, she still found positives -but they were equally split between patient and control. Again, the charitable interpretation is that the patient samples were handled differently from control, in a way that allowed contamination of patient samples. And that when she got blinded samples, she handled some of them the way she handled patient samples, and some the way she handled controls, so the contamination got into both sets.

Again, I'm being charitable.

But what she didn't do is what Silverman did - say 'hey, no on else is confirming our work, perhaps I should blind samples and check myself, and figure out what the issue is." It didn't get found out until blind samples were pushed on her from outside.

THAT is a problem, and that is the difference between how I perceive Silverman and Mikowits.

I still don't fully agree with what you say here. Initially, Silverman and others had the same problem. They found 40% XMRV in specific tumors compared to 1.5% in others. So clearly these samplese were handled different too. Same for the Lo et al. paper, unless you believe in a wide class of HGRVs, it's highly likely that that data is caused contamination too, so it directly means they also used the samples differently.

The Lo and Lombardi papers ALSO took great lengths to avoid and check for contamination. That's how I read it at least.

So again, I think your accusations are not really fair in this case. Now, if you're going to condemn/ praise these scientists for what they did after these papers (Singh, Silverman vs. Mikovits), I fully agree with you. But that's not what you were saying in the first place.

 

[markmc20001]

Well put Ixchelkali, my sentiments as well.

I've spent a fair amount of time tonight trying to understand some of what's transpired lately. I have no scientific research background whatsoever, so I don't even try to understand many of the technical arguments. But I do follow politics fairly closely, and watch how people sometimes use less than forthright methods when trying to influence other people. Fairly one-sided arguments make me especially suspicious.

My current take on things: Giant kudos to WPI and Judy Mikovitz for everything they have done on our behalf. Despite some apparent missteps on their parts, I think their intentions have always been good, and their efforts have given ME a lot of publicity. Some would argue it's mostly been bad publicity, but I have to disagree. I think more people than ever now believe there is a pathogenic cause to ME, primarily because of the articles generated by the original 2009 Science paper.

It appears both WPI and Judy Mikovitz have made mistakes. Some argue they were major, others argue they were minor. Either way, I would say it matters far, far less than the fact that there are apparently many things about the research results which are not so easy to scientifically dismiss. From what I can gather, many unanswered questions call for much more research, and need to be more fully explored (and probably will).

From my own perspective, so much of this controversy is far better than no controversy and/or no publicity at all. I've been dealing with pretty entrenched ME for almost 30 years, and the dearth of information and/or research during most of this time has been disheartening. Though the news of the past few days has been fairly disconcerting, to me its far preferable than no news at all. Personally, I have more confidence than ever that research will continue, and that breakthroughs will happen as a result.

Best, Wayne

Cheers Wayne and Ixchelkali. Agree.

I don't understand all the science, but can spot the all spin, politics, propaganda, and one sided arguments from a mile away. Along with the influx of new/infrequent users that show up to jump on the forum bandwagon when the negative press releases come out.

I can also easily identify when proper logic hasn't been applied.

I'm especially frustrated with the adversarial nature of the scientific process. I would have expected it to be a collaborative effort to find answers in the ME/CFS field, similar to the engineering field where I used to work. Instead it has been battle of the researchers. An abuse Mikovitz campaign especially. However, knowing the history of the politics. It is not surprising, andI'm sure Mikovitz the WPI and all knew it was going to be difficult.

I'm pretty sure the controversy has added stress to the relationship between the WPI and Mikovitz. It's unfortunate, because it has put a serious dent in finding a biomedical cause to our disease.

I'm still hopeful that the truth comes out about HGRV's eventually.

I don't think Lombardi/Mikovitz or Alter/Lo and others would have slipped up with something as simple as contamination. That seems like it would be the most important thing any scientist would be sure to rule out out doing this type of testing. Make sure you are NOT finding contamination. Step one right? It's a no brainer that anybody would be extremely cautious about contamination. Then with supporting studies from the FDA just makes it sense to me.

 

[oceanblue]

My current take on things: Giant kudos to WPI and Judy Mikovitz for everything they have done on our behalf. Despite some apparent missteps on their parts, I think their intentions have always been good, and their efforts have given ME a lot of publicity. Some would argue it's mostly been bad publicity, but I have to disagree. I think more people than ever now believe there is a pathogenic cause to ME, primarily because of the articles generated by the original 2009 Science paper.

It appears both WPI and Judy Mikovitz have made mistakes. Some argue they were major, others argue they were minor. Either way, I would say it matters far, far less than the fact that there are apparently many things about the research results which are not so easy to scientifically dismiss. From what I can gather, many unanswered questions call for much more research, and need to be more fully explored (and probably will).

From my own perspective, so much of this controversy is far better than no controversy and/or no publicity at all. I've been dealing with pretty entrenched ME for almost 30 years, and the dearth of information and/or research during most of this time has been disheartening. Though the news of the past few days has been fairly disconcerting, to me its far preferable than no news at all. Personally, I have more confidence than ever that research will continue, and that breakthroughs will happen as a result.

I agree with your sentiments here, including that we have much to thank WPI & Mikovits for, and that we're in a better place now than before.

What I find so frustrating though, is that things could have been so much better than this. While I think things are marginally better overall, with some good researchers like Lipkin coming in to the field, there's also a huge negative wth many researchers - not just those involved in XMRV, put off CFS research. If WPI/Mikovits has played a calmer hand after their excellent Science paper (well, excellent pre-retraction & slide problems), and if there had been less vitriol from a vocal minority of patients, the XMRV saga could have left us really well placed with a fresh evaluation of CFS. Maybe the Chronic Fatigue Initiative will do that anyway but I'm left with the sense of an opportunity missed.

 

[ukxmrv]

. If WPI/Mikovits has played a calmer hand after their excellent Science paper (well, excellent pre-retraction & slide problems), and if there had been less vitriol from a vocal minority of patients, the XMRV saga could have left us really well placed with a fresh evaluation of CFS. .

I don't think that this was ever going to happen. If you read "and the band plays on" you'll learn about how Virologists regard this as almost a combat sport and that they will do anything to knock a rival "player" out of the field.

The virologists who have attacked XMRV were not doing things to help us when it was discovered and I am sceptical that they will in the future.

AIDS patients were far more vitriolic than CFS ones were yet scientists raced to make the discovery of HIV and fought over it. Took years to develop a tests as they battled for the patent/discovery rights. I don't believe that in the intervening years they have all become so thin-skinned that they cannot cope with what a small minority of patients said about them on the internet.

We have had scientists coming to this forum and others claiming to be family members of patients yet have done nothing to raise funds or encourage research. It looks bad for them as a profession and as family members. Something is badly wrong here.

 

[currer]

Do we think this is Defreitas over again, then?

Are we back to CBT and GET and silly alternative treatments?

No ARVs for cancer patients, even when the cancer can remit under this treatment?

And are the patients, untreated and ill as they are, going to be blamed for this state of affairs because they get distraught?

 

[Dainty]

Moderator: A sampling of posts from the previous discussion have been copied or moved over into this new thread for continued conversation. An effort was made to keep the issues as readable as possible.

As we don't currently have the manpower to moderate properly the other thread will remain locked in its current state.

Please continue with this discussion civilly and report offensive posts rather than respond to them, as spelled out in our forum rules. Thank you.

 

[Parismountain]

I've read a number of posts where people are very adamant that Dr. Mikovits perpetuated intentional fraud. I really don't understand minds that could come up with a conclusions like that. If you believed she knew all along her research was wrong, where could that possibly lead Dr. M to in say a month, a year, five years? Eventually you would have to know you would be found out. You'd have to believe she was mentally unbalanced (severely) to think she's capable of hoaxing.

Someone on the order of Casey Anthony who partied it up moments after she knew her child was dead (or killed her), now a personality like that I could understand attempting a scientific fraud on a group of ill people but to those who think she intentionally triedto hoax the world on XMRV, do you folks really think she's like that? I mean come on.

 

[Enid]

Short answer - NO !

 

[oceanblue]

If you read "and the band plays on" you'll learn about how Virologists regard this as almost a combat sport...

The virologists who have attacked XMRV were not doing things to help us when it was discovered and I am sceptical that they will in the future.

AIDS patients were far more vitriolic than CFS ones were yet scientists raced to make the discovery of HIV and fought over it. Took years to develop a tests as they battled for the patent/discovery rights. I don't believe that in the intervening years they have all become so thin-skinned that they cannot cope with what a small minority of patients said about them on the internet.

We have had scientists coming to this forum and others claiming to be family members of patients yet have done nothing to raise funds or encourage research. It looks bad for them as a profession and as family members. Something is badly wrong here.

Love the combat sport analogy!

I was doing biochemistry degree in the early days of HIV and the combat sport analogy certainly applies to some of the researchers at my institution; it applies to quite a lot of those in molecular biology research there then, and now. But they didn't go round making pugnacious claims not backed up by their published work - not least because they'd have been savaged by the other Pit Bulls in their field. (As you alluded too, the dispute between Gallo and Montagnier over who really discovered HIV was one of the all-time Science Fist Fights)

I'm not sure the comparison with HIV holds up for patient behaviour. While I do remember AIDS and HIV patients, and much of the gay movement, being aggressive and very effective campaigners on the issue, I don't recall them going round calling researchers inept or malicious - they were demanding much, much more research and better care (they got it too). That's a differet scenario to CFS now. (Many times since I got ill I've wished we could have been half as effective, though there are many reasons why it's different for us).

Above all, in the early days (the comparable period with CFS/XMRV now) HIV was THE subject that every researcher wanted to study. Epidemiological work had decisively established AIDS as having an infectious origin and people were dying of it at an ever increasing rate - the race was on to first find the infectious agent and then find the cure/treatment. HIV was also the first human retroviral disease, and molecular biology had reached the stage where it was well placed to study such a complex virus. Government and institurions were pouring money into HIV research. It was the dream place to build a research career, even if their had been some flak from patients. By contrast, the biology with CFS is far muddier and there is no flood of money to tempt researchers.

All of which is a long-winded way of saying that researchers would have piled into HIV regardless of any patient hostility.

I certainly agree that the response of some other virologists demonstrate that this was never going to be a debate tinged by sweetness and light. But that still leaves plenty of scope for a less aggressive approach by proponents of XMRV, one that would have left us better placed when the wheels started falling off.

 

[jace]

As you may imagine, these issues are being discussed elsewhere on the internet. Some long-term members may remember Dr. Yes, who posts eloquently on this subject here, reply no. 26.