TWiV 164: A look back at 2011: XMRV, CFS, and Prostate Cancer

[currer]

The discussion on this thread shames the patient community.
And insults a woman who has made great efforts to try to do some good for us.

Shame on you all.

 

[justinreilly]

Well, not too happy that Prof. R. said I was incorrect about ME being associated with all those viruses and cancers! According to Alan Dove, we get all these infections- HHV6, enteroviruses etc- because we sit around in an inactive state!! Will have to comment later as I have to go.

 

[floydguy]

Firestorm, once again thank you for your hard work researching and transcribing. I love the podcasts and found the implied remarks very interesting as just a few months ago many were calling for security in the BWG study, LOL!!

I think we need someone in the US to write about all this and I nominate Trine Tsouderos. She did a podcast/video with Vincent Racaniello , and I was very impressed with her science based viewpoint and her veracity about checking facts thoroughly before publishing articles.

I will come back and post the TWIV with Trine for those interested in hearing her. It was the one at the Chicago conference.

Again thanks.

Barb C. :>)

I nominate Jon Stewart (or alternately Dave Berry). I trust him a lot more than Trine and we might at least get a good laugh. Trine knows where her bread is buttered and I'll give you a hint it's not from ME patients. However, Trine has a bright future as a "newscaster" for Fox News, CNN or any of the other faux news channels. I actually kind of like Trine but I haven't seen any evidence that she really gives a damn about making progress in ME or any other disease. I have seen a lot of evidence of her sucking up to the black hole of waste and lack of accountability better known as the medical-industrial complex.

 

[Tony Mach]

They made some good points, but once again they were biased in heaping all the suspicion and burden of proof on the 'pro-HGRV' camp. They even implied that Mikovits might have tampered with the samples and might do so again in the Lipkin study if security wasn't tight enough. That made me feel ill that they would go that far (yet remain silent on all the real scumbags in ME 'research).

Well, the XMRV plasmid found in the patient samples by Silverman did not come from patients. So someone put it there, either with intend or by accident. Now you can say it was Silverman, but Lipkin is not doing a study with Silverman. And frankly, if I were Lipkin, I wouldn't trust either and rather make sure that the study could not be tampered with. The question to be answered is if Mikovits can tell patients from controls in a properly blinded fashion. I have my hunch, you have surely yours we'll see who's right.

 

[barbc56]

Thanks Firestorm, your forum name suits you. I had not had a chance to post this. Yes this was the blog and although I was somewhat impressed with her, this interview, restored some of my faith in the media.

Yeah I know not everyone likes what she says but I think it's the message.

I had forgotten about Amy Dockser-Marcus in my foggy brain. Another good reporter, IMHO.

Barb C. :>)

 

[barbc56]

The discussion on this thread shames the patient community.
And insults a woman who has made great efforts to try to do some good for us.

Shame on you all.

I guess it is all how you perceive things. I am part of the community and couldn't disagree with you more and I think that's okay.

Why is it okay to criticize people who you think support your position and not okay to criticize people who do support your position. Maybe the word shouldn't be criticized as much as discussion and analysis.

The world is made up of different beliefs.

I am not ashamed in the least.

Take care.

Barb C. :>)

 

[floydguy]

Thanks Firestorm, your forum name suits you. I had not had a chance to post this. Yes this was the blog and although I was somewhat impressed with her, this interview, restored some of my faith in the media.

Yeah I know not everyone likes what she says but I think it's the message.

I had forgotten about Amy Dockser-Marcus in my foggy brain. Another good reporter, IMHO.

Barb C. :>)

I'll take Amy Dockser-Marcus or David Tuller. I can trust whatever they have to say good, bad or indifferent. Trine has an agenda that roughly translates as anything that moves the needle to 100% of US GDP towards status quo medicine=good. Anything that might impede this goal=flying saucers, conspiracy theories, Elvis is alive, etc.

 

[barbc56]

Well, not too happy that Prof. R. said I was incorrect about ME being associated with all those viruses and cancers! According to Alan Dove, we get all these infections- HHV6, enteroviruses etc- because we sit around in an inactive state!! Will have to comment later as I have to go.

To my knowledge, there are no studies that show ME associated with Cancer. Probably should be studied as some time, though. Since cancer as well as ME probably have many causes and subsets, it would be difficult to sort this out.

As far as Alan Dove, I didn't like the way he worded his sentence and hopefully may not be what he meant but he does redeem himself when he says:

But that doesn't tell you anything about the cause of the disease.

Barb C.:>)

 

[barbc56]

I nominate Jon Stewart (or alternately Dave Berry). I trust him a lot more than Trine and we might at least get a good laugh. Trine knows where her bread is buttered and I'll give you a hint it's not from ME patients. However, Trine has a bright future as a "newscaster" for Fox News, CNN or any of the other faux news channels. I actually kind of like Trine but I haven't seen any evidence that she really gives a damn about making progress in ME or any other disease. I have seen a lot of evidence of her sucking up to the black hole of waste and lack of accountability better known as the medical-industrial complex.

I'll take Amy Dockser-Marcus or David Tuller. I can trust whatever they have to say good, bad or indifferent. Trine has an agenda that roughly translates as anything that moves the needle to 100% of US GDP towards status quo medicine=good. Anything that might impede this goal=flying saucers, conspiracy theories, Elvis is alive, etc.

Can you give me examples of these claims.? They are opinions and not facts. Nothing wrong with opinions but need to be stated as so.

I think Jon Stewart or Dave Berry would be a hoot. We can always use a good laugh.

Barb C.:>)

 

[floydguy]

Can you give me examples of these claims.? They are opinions and not facts. Nothing wrong with opinions but need to be stated as so.

I think Jon Stewart or Dave Berry would be a hoot. We can always use a good laugh.

Barb C.:>)

Oh, sorry let me re-phrase: It is my opinion that....sorry I had to make that clarification. Is there really anybody out there who needed that clarification??

 

[barbc56]

All I can tell you is one of the mods. told me that if people say something that is opinions, that others might think is contentious, to make sure to state it as an opinion. I think the reasoning behind it was then it doesn't sound like you are dissing others. This was at a point where lots of people were putting down others. But, yeah, I get your point. As I said, nothing wrong with opinions.

 

[Firestormm]

TWiV 165: The email zone

Am going to pop this here. New TWiV but a follow-up email from Justin is addressed so it is related to this thread. As usual this is a first effort and I need to edit it again later most likely:

TWiV 165: The email zone: http://www.virology.ws/2012/01/08/twiv-165-the-email-zone/

Hosts: Vincent Racaniello, Dickson Despommier, Rich Condit, and Alan Dove

Vincent, Dickson, Rich, and Alan answer listener questions about XMRV, cytomegalovirus, latency, shingles vaccine, myxomavirus and rabbits, and more.

First email right off the bat:

Vincent: 'First one is from Justin. Who writes: Are you, Alan Dove and Professor Racaniello, saying Mikovits and/or others on the Lombardi paper lied about the results or blinding? I think circumspection is a natural human reaction to the allegations of theft that have been made against Dr Mikovits. My impression is that she was at least out of line maybe worse but I think we need to wait for all the evidence in those cases to come out before we make any conclusions. All right. Lets pause and answer that. Alan Dove were you?

Alan: I was notI have not said that anybody was lying and I will not say that anybody was lying until its incontrovertibly proven which in science usually means that the person comes forward and says that they were lying, or somebody comes forward and provides conclusive evidence they were.

Vincent: We distinctly did not say that.

Alan: We did not wave the fraud flag. But I will say that yes I have seen a lot of sketchiness coming from the Mikovits et al camp and it comes in several flavours. There was the whole setting up a commercial assay for a virus that hadnt been proven to cause any disease and advocating that people take toxic anti-retrovirals for that virus and going on a speaking tour around the world where people made talks at woo-woo conferences talking about vaccines and autism and that sort of thing and, you know, theres a certain amount of that you lie down with dogs, you get up with fleas I think

Vincent: We were just discussing the figure in that paper which had been mislabelled and were trying to figure out why that happened because we dont have an explanation and at best it is sloppy science

Alan: Yes.

Vincent: If you mislabel your figure its sloppy. And for a science paper you really shouldnt do it. Everybody makes mistakes, but when you make a mistake please tell us what you did say Yeah, I messed up and that hasnt happened.

Alan: And when the mistake is that consequential you know this wasnt that someone just forgot to dot an i this is really it guts confidence in all the conclusions.

Rich: If you look at the legends for those two figures they describe two completely different experiments

Alan: Yes.

Rich: Ok. Its to me mislabelling is not a satisfactory explanation for what went on there. I looked at that as carefully as I could.

Vincent: So Id like to know the answer.

Rich: XXX would call that odoriferous. Something stinks.

Alan: Yes.

Vincent: We didnt accuse anyone. You may have read into what we said, but we would like to know what happened. I think its sloppy at best. And thats not good science. All right and moving onin this rigorous study by Lipkin wont be believed by you, you say, if the results confirm the Lombardi paper. The burden is on them and not the other less rigorous studies. What I said was that if Ian Lipkin finds some viruses they will have to be confirmed by others. We are not going to just say, Oh Ian Lipkin found this lets make a vaccine against this virus. Others will have to confirm, just as we said the Lombardi et al. had to be confirmed.

Alan: And I said the burden is on them. And what I meant by that is if you make an extraordinary claim that flies in the face of I wouldnt call them less rigorous studies I would call them a mountain of other studies that say that XMRV is not causing any human disease and that retroviruses are not correlating with CFS if you are going to make a claim like that against all the other evidence that is all ready out therethe burden is on you to explain how you got that result. And the analogy I would draw is if you make a claim in that you saw neutrinos moving faster than the speed of light which would overturn special relativity, now bear in mind weve built an entire infrastructure on special relativity, my GPS works I was just using it in my car today if special relativity were wrong it wouldnt. So its not quite that far along with XMRV but were pretty close to that point where you would have to look at it and say How can all the rest of this be wrong, based on one finding? So there would be an enormous burden of proof to say you gotta prove you didnt screw anything up. Because thats gonna be the first assumption.

Vincent: All right. Moving on with hiswith Justin. You guys do make some good points. There are multiple lines of evidence against XMRV infecting humans in vivo however your assumptions and conclusions about the pro-human gamaretrovirus scientists seem to me to be biased once again as compared to your conclusions, as about the anti-HGRV scientists and your outright fraudulent scientists involved in XMRV and in ME science in general e.g. CDC/Weasly school including McClure.

Alan: Now whos making fraudulent claims?

Vincent: I have no evidence that there are gammaretroviruses that infect humans. Does anyone else?

Rich: Right. I agree. I have no evidence. And thats where my expertise on this whole thing starts and ends. Im a virologist. This
XMRV stuff came up. Weve evaluated that story as carefully as we can. Theres no other credible evidence that I can see that human retroviruses cause this disease period. End of that story. Yes theres lots of stories on ME. But end of the virology storyfor now.

Vincent: Yeah for now. Thats fine. Who knows what will come out.

Alan: And I see no evidence of fraud by these other characters who were just mentioned.

Vincent: Correct. I dont

Alan: Accusing the CDC and McClure and Wessley of fraud thats a very, very serious charge and I would expect some very, very serious evidence and it doesnt exist.

Rich: They may be sloppy too at times

Alan: Yes and

Rich: but not necessarily fraudulent.

Alan: Conclusions that you dont like are not the same as fraud. Ok. And research priorities that you dont like are not fraud. There were some financial irregularities that were investigated and that investigation is a matter of public record, and at no point as far as I know what that ever called financial fraud, which would not even be scientific fraud. I believe that was accounted for as mismanagement. Which is certainly not good but its not the same critter.

Vincent: Moving onThere is some circumstantial evidence of potential sketchiness i.e. Mikovits and you have no problem assuming the worst which is the normal human reaction but why the double-standard when it comes to the other science when it comes to the proven frauds who wage war on ME/CFS? Ive asked this numerous times and dont get an answer.

Alan: See above.

Vincent: Alan just addressed that. And he writes I appreciate that you published David Tullers piece on the CDC but thats all you have done. In this podcast you mentioned that he wrote the piece but you didnt mention another documentation of the fake science done on ME by CDC. I cant think of another way to explain it but by this

Rich: This is a virology podcast. It is not an ME/CFS podcast. Ok. We address the virology.

Alan: And its not a CDC bashing podcast. Again you can certainly question and disagree with and vehemently disagree with research priorities of federal agencies or whoever Im all about that its fine but to say that its fake or its dishonest or fraud just because you dont like those research prioritiesthats not cool. And yes there was a bit of a scandal I guess it was in the mid-nineties with the finances of the CDC and how the CFS budget was being allocated but as I say that was investigated and that investigation was all a matter of public record and there it is.

Rich: And by the way I finally read Tullers piece completely prompted in fact by Justins letter actually and its very good. And so anybody who is interested in all of that beyond the virology should have a look at that its very good.

Vincent: Thank you for your letter. You apparently dont like what we do but we try to be unbiased and evaluate the virology. And in this case there have been a lot of issues and one of them was a sloppy figure, among others as we point out but if other studies have problems we will point them out as well but I doubt anyone would notice because none of them are as highly charged as this one.'

 

[Esther12]

your outright fraudulent scientists involved in XMRV and in ME science in general e.g. CDC/Weasly school including McClure.

What a daft thing to say.

Wessely et al have been desperately trying to act as if patient anger aimed at them is the same as the misplaced anger aimed towards McClure, and here we have a patient reciting their talking points.

McClure may have made a couple of poorly judged comments to the media, but she did nothing close to fraudulent, and it looks as if her claims about XMRV/CFS were correct. I have no understanding as to why any patient would think it a sensible idea to link McClure and Wessely in this way, in a letter to virologists.

Even with Wessely, I'd be unwilling to claim 'fraud' without having more evidence as to his motivations. Far better to just present his own work, and explain our problems with it (I started a recent thread here if anyone wants to add to it: Simon Wessely). I think that it's fair to talk about dishonesty, given the often manipulative nature of the psychosocial approach to CFS, but I'd never just make that accusation in an e-mail to those with no prior knowledge of CFS, and without providing some thorough research and citations. The culture that surrounds science means that an accusation of dishonesty is seen in a different light that in other areas of life (there's lots of interesting stuff to be said about that, but not now), and discussions with those who are a part of this culture need to account for that.

edit: Having said all that, I want to extend some sympathy to Justin. CFS has been treated really badly, and a lot of us have suffered badly because of that, so I understand that it can be difficult to write in an entirely reasonable and dispassionate manner about it... I know that I will often fall short. In the last year, when we've seen how PACE was spun and how little interest there is in the truth from certain sections of society, I've been feeling much more irate about CFS stuff. It's really important that this doesn't end up leading us astray though, as we're already in such a position of weakness.

 

[Firestormm]

Just like to add also that Justin might like to consider publishing his email entirely? It may be that I have lost the context somewhat in my transcription (may also have made some errors as I stated - was but a first attempt). Still I did 'like' your post Esther and would echo its' sentiments entirely.

 

[Esther12]

I do feel bad for not doing more to stand up for McClure. I did so somewhat half-heartedly, but at the time I was more likely to assume that people like Gerwyn might be making worthwhile virological points. McClure's belief that XMRV was associated with prostate cancer, along with her 105% certainty that it wasn't in UK CFS patients was a strange combination, and along with some of the things she said about Wessely, it made it difficult to be mount a committed defence of her.

It was always crazy to think that the McClure and Wessely study was part of a deliberate cover-up though, and I think that almost everyone realised that at the time, even if there were concerns about the study and distrust of the result. Virology isn't like psychology, there's far less room to fudge results and spin data.

That a couple of patients seem to have taken so forcefully against McClure is really unhelpful, given people's tendency to lump all CFS patients together, and judge us as such.

Still I did 'like' your post Esther and would echo its' sentiments entirely.

I lost your 'like' in an edit! I want a 'hate' button for posts too. I 'like' too many posts here - I'd be clicking non-stop to get them all.

 

[ukxmrv]

I don't know how many UK ME patients would support you Esther in your views on McLure and Wessely. Patients with ME who had a XMRV test chose not to work with her. Someone approached her and posted to Facebook. Other patients chose not to work with her as they were put off with her blanket assurances that there was no retroviral involvement in ME and they felt further put off by her decision to speak at a psych conference last year.

From your comments about being swayed by Gerwyn at the time it seems as if in many ways you lurch around and make up your own opinions on things depending on the loudest views being posted at the times. If you disagreed with the views being posted and could conter-argue with scientific views why didn't you say something?

I'd lke to see you post on why you felt that the Wessely/McLure study was ever a good one and also on McLure's prostate cancer studies from a scientific point of view rather than just more opinion after the event and well away from the long threads about them. Plenty of patients posted pros and cons of those studies at the time but I can't remember ever seeing any actual critiques of the science from you then.

It may be your opinion that there are less places to hide in retrovirology but it still doesn't make the McLure/Wessely study any better. Why not go back on the earlier threads and see if you can answer some of the concerns patients raised at the time in a scientific way?

 

[Esther12]

I don't know how many UK ME patients would support you Esther in your views on McLure and Wessely. Patients with ME who had a XMRV test chose not to work with her. Someone approached her and posted to Facebook. Other patients chose not to work with her as they were put off with her blanket assurances that there was no retroviral involvement in ME and they felt further put off by her decision to speak at a psych conference last year.

I was put off by her blanket assurances about CFS, especially as they came at a time when she said that she thought that XMRV was associated with PC. Combined with her association with Wessely, it did make me think that she was being influenced by prejudices about CFS. None of that is remotely close to fraud though. Since then, it seems that she did get unfairly attacked by some CFS patients, and that has led to her saying some more things about CFS which I think are unreasonable... but on a human level, that's somewhat understandable. When the legitimate anger of CFS patients gets misdirected, it will turn people against us, and lead to us being treated more unfairly.

From your comments about being swayed by Gerwyn at the time it seems as if in many ways you lurch around and make up your own opinions on things depending on the loudest views being posted at the times. If you disagreed with the views being posted and could conter-argue with scientific views why didn't you say something?

I said: "I was more likely to assume that people like Gerwyn might be making worthwhile virological points".

I am not going to be able to educate myself to the point that I can make meaningful judgements upon matters which divide professional virologists. At the time, Gerwyn had already made a number of arguments which I thought were poor, but there was still a possibility that I was just unable to appreciate their virological arguments. I never assumed that they were right, but there was greater uncertainty in this area.

I'd lke to see you post on why you felt that the Wessely/McLure study was ever a good one and also on McLure's prostate cancer studies from a scientific point of view rather than just more opinion after the event and well away from the long threads about them. Plenty of patients posted pros and cons of those studies at the time but I can't remember ever seeing any actual critiques of the science from you then.

It may be your opinion that there are less places to hide in retrovirology but it still doesn't make the McLure/Wessely study any better. Why not go back on the earlier threads and see if you can answer some of the concerns patients raised at the time in a scientific way?

I do not have the knowledge or expertise to say for certain what I think of the McClure study. But it's finding that XMRV is not associated with CFS has now been replicated by a number of others, and that is important. If Mikovits was able to distinguish between samples from CFS patients and healthy controls under independently blinded conditions, then this would be important. Validation matters more to me than the particulars of any one study, especially as with a virus which little was/is known about.

 

[joshualevy]

McClure may have made a couple of poorly judged comments to the media, but she did nothing close to fraudulent, and it looks as if her claims about XMRV/CFS were correct. I have no understanding as to why any patient would think it a sensible idea to link McClure and Wessely in this way, in a letter to virologists.

I think it is important to remember how scientists are going to view this:
1. McClure and Wessely (and many others) were correct in saying no link between XMRV and CFS.
2. Mikovitz and Lombardi, (and a few others) were wrong in saying there was a link, and especially wrong to continue to hold that belief long after it was clear that it was wrong.

That it. From a researcher point of view, that's all there is.

So if someone starts talking about how Wessley or McClure are bad and Lombardi and Mikovitz are good, to an actual researcher, that's going to end up sounding like they are arguing that the sky is green or something. It sounds completely delusional.

Joshua (not Jay) Levy

 

[ukxmrv]

Joshua,

Are you aware of the previous work of Prof Wessely and what is your opinion on that?

Surely a researcher would not be so naive as to not put a particular study in context and also consider the merits of their body of work? After all we are hopefully talking about intelligent people with an ability to see patterns.

If I were to discuss a particular doctor or scientist I would refer to earlier problems in their work, the problems with the work of their closest associates (which they support) in additon to any current work. Obviously any one study can stand on it's own merits or be subject to the same spin as earlier studies (being quoted by their colleagues etc).

It's something I do for any ME research and not I'm not singling out at Wessley et al.

 

[Lou]

I think it is important to remember how scientists are going to view this:
1. McClure and Wessely (and many others) were correct in saying no link between XMRV and CFS.
2. Mikovitz and Lombardi, (and a few others) were wrong in saying there was a link, and especially wrong to continue to hold that belief long after it was clear that it was wrong.

That it. From a researcher point of view, that's all there is.

So if someone starts talking about how Wessley or McClure are bad and Lombardi and Mikovitz are good, to an actual researcher, that's going to end up sounding like they are arguing that the sky is green or something. It sounds completely delusional.

Joshua (not Jay) Levy

Delusional? LOL, who(reference last para of post 13), in light of Wakefield's lawsuit, recently praised as great the idea of Brian Deer investigating possible misconduct in the Lombardi study?