Nature article about Judy Mikovits and XMRV

[SOC]

Lol, I found it curious that everyone was referring to it as "the prestigious journal, Nature".

Lol! Yeah, I felt pretty foolish after the fact.

I agree that a lack of defensive response from Dr P does not indicate anything definitive. As I stated earlier, I believe Dr P wouldn't give the article a second glance, much less a defensive response. He has been insulted, attacked, and threatened by much more powerful influence than this journal, and he didn't make a fuss, nor lose stride. I could be wrong, but I doubt he would say a word about this article, even if the statements are untrue. People with integrity tend to not feel threatened as easily.

I'm with you 100%. I would certainly not expect Dr P to respond to this article. When I thought it was in Nature, I thought he might given the audience. But you know him infinitely better than I do, so I take your word for the fact that he wouldn't bother. Good for him.

Kurt...I know that Dr P has been adamantly against the use of ARV's (for most) from the start, and I haven't heard the rest of WPI stating anything as you say...... "suggesting they should all be on ARV's". They have expressed support for the use of ARV's in certain situations at this point, but to the best of my knowledge, they have not (as you state) suggested that all patients need to be on them. Nor has the WPI led people on with "false hopes" as you state. The WPI made it very clear from the start that they were not saying xmrv causes CFS. They went out of their way, in bold print, to avoid creating such false hopes.

Agreed on all points.

 

[Marco]

Can anyone think of a reason why a positive study by Peterson and Levy, using identical methods to WPI and the same cohort, would help WPI? Would it not just be dismissed as the same group of 'special' patients and the 'Peterson' from WPI? Hardly external validation of the Science paper.

On the other hand, a negative result would be a whole other ball game.

Its difficult to see what would motivate them to want to do this.


More generally, if WPI have something up their sleeve, as Dr M suggested, its well past the time for revealing it otherwise I fear no-one will be listening any more.

 

[currer]

Marco, I understand your impatience, but we cannot impose a timetable on the WPI or any other institution in the outside world.
They are subject to pressures and constraints we know nothing of.

Please let's allow them to make their decisions at their own pace.

I am concerned that Dr. Mikovits is identifying too much with the patients and their desperation. As she is not a clinician, she may not have the training to employ sufficient detatchment in the face of such human sickness and suffering. This could put pressure on her and adversely affect her judgement. We do not want to have that effect.

I used to be active in the patient organisations in England, and used to know some of the clinicians here who worked to promote our cause. There are often good reasons why certain decisions are made, even though this may not be apparent to the onlooker.

 

[Marco]

Marco, I understand your impatience, but we cannot impose a timetable on the WPI or any other institution in the outside world.
They are subject to pressures and constraints we know nothing of.

I appreciate this currer and I'm quite happy to wait for things to take their natural course.

But its not us imposing any timetable, it is as they say in politics 'events'.

The general perception is that XMRV is losing momentum rapidly and without some riposte the contamination meme will be hard to shift.

Sometimes its easy to overstimate the persuasive power of science and underestimate the power of received wisdom.

I certainly wouldn't want WPI or anyone else to do anything ill advised in the interests of reassuring the patient community but it has gone awfully quiet on the positive studies front.

Allowing the contamination meme to continue unopposed (or at least un-discussed) won't make it any easier for positive studies to be published.

Frankly I'm surprised that the likes of Silverman, Ruscetti, Mikowitz or Singh haven't commented on the latest raft of 'negative' papers to at least add some context to the discussion.

Please correct me if I'm wrong, but I haven't seen anything.

 

[In Vitro Infidelium]

IVI, there was no question you were referring to and indirectly insulting WPI with the 'tin foil hattery' comment. That was my point, and I am surprised you are defending your statement. There is no insulting terminology that is not insulting. I have no problem as a mod with someone saying they disagree or believe someone is in error. But the problem with throwing around insults, no matter how cleverly crafted, is that it raises the temperature of the discussion and before too long someone will be accusing someone else of being a Nazi sympathizer, or something extreme like that...then the mods have to waste a lot of time putting out fires and soothing hot tempers...

Kurt Ive no wish to add to the Mods work load if that can be avoided, but I would appreciate it if you would clarify some points about this forum:

1. There are numerous examples of forum posters insulting both individual scientists and administrators, as well as institutions, none of which attract moderator attention. Is there then a forum list of individuals and institutions who are acceptable targets, and/or a list of those who are specifically exempted from insult' ?

2. Is it the case that a robust/emphasised criticism of a statement or other set of words can (in forum terms) be treated as an insult that is equivalent to insulting the person or organisation that publishes the statement ? If that is the case shouldnt that be made absolutely clear at the point that people register given the implications for free speech, after all the only circumstance where that kind of limitation is usually found is in represive political or relgious contexts ? And does the effect of 'insult of words = insult of person' not amount to a blasphemy law ? Surely there is a difference between saying what X said is stupid and X is stupid ?

IVI

 

[In Vitro Infidelium]

since ABOSLUTELY NO ONE knows the actual causes of "ME/CFS, fibromyalgia, atypical MS, and autism" then yes, they COULD be linked
Science is about probabilities, not "truth" each of those has serious neurological issues, we don't know their causes, thus suggesting a link is not impossible, especially as the WPI had been doing research into such, is therefore not "tin foil hattery", in fact, it is good scientific theory. Theories require facts though and a lot of testing.

My criticism of WPI was not that it suggests a ‘link’, but that it makes a definitive statement that there is an unequivocal correlation between these disparate conditions (medicalising ASD is in itself dubious) on the basis that they are all of a common character (neuro-immune disease) , a character which has no estabished scientific or medical validity.

What I described as "tin foil hattery" is this statement “Research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism” , if anyone can demonstrate the scientific validity that supports this statement I’d very happily acknowledge that my criticism is misplaced, as it is I stick by it, I certainly can’t see any scientific theory being involved.

Theories require proof of hypothesis, hypotheses require testing, testing requires observation – “neuro-immune disease” WPI does not even have a supporting proposal of hypothesis, never mind actual hypothesis testing, as for theory, the probability that any one hypothesis will provide a proof, is very small.

Just so folk get this, the one MASSIVE underlying caveat of Science is:
"These are the facts and theories as we know them today, these may change in the light of further evidence being discovered"
absolutely no damn room for dogma or complacency in science. WPI maybe wrong, hell the Weasels much as I loathe them, maybe right
though odds in latter case arguably 2 to the power 3000 against! which is a very very VERY remote chance indeed, but it's sitll not impossible, which is the difference between Science and Science-used-as-a-disguise-for-quasi-religious-zealoty-for-those-who-demand-CERTAINTY!

On that (including the reference to the eminent Professor Wessely) I agree entirely.

IVI

 

[Esther12]

What I described as "tin foil hattery" is this statement Research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism , if anyone can demonstrate the scientific validity that supports this statement Id very happily acknowledge that my criticism is misplaced, as it is I stick by it, I certainly cant see any scientific theory being involved.

I think you've misunderstood what Mission Statements are. They're meant to be meaningless garbled nonsense constructed from imaginary words. This is just a sign that the Whittermores come from a corporate culture. Google some 90s Dilbert.

LOL @ testing the scientfic validity of mission statements.

 

[currer]

Hi, Marco,
Last I heard they were supposed to be preparing a major refutation of the negative papers and to have signed a non-disclosure agreement until publication.(I think it was only last week!)
It was on a thread somewhere. I'm sure someone can find it for you.

I suffer just like you from the tension of waiting, but in actual fact very little time has passed in real terms. It is because we are on the internet and get news instantly - I check all the time now - it is like an addiction. Our sense of the passage of events is artificially speeded up by electronic communication - and also that many are housebound and rely on the internet for contact. We are like newshounds wanting a headline news story every day!

I am sure things will work out eventually. I have another life, because I am actually quite recovered now, and I am sure if I concentrated more on my day-to-day affairs time would not hang so heavy with regard to the XMRV news, - but I check the internet repeatedly in case there are updates!
Madness!

 

[omerbasket]

Does someone knows Dr. Peterson's email?

 

[garcia]

In my opinion, much of this debate and flack could have been avoided if WPI had handled their discovery as an early stage finding, a hypothesis, and not started testing patients

Well given that certain companies (ahem) were trying to cash-in by falsely claiming a pin-prick test could pick up this retrovirus, the WPI really had no choice but to offer their test to patients.

and suggesting they should all be on ART

When did the WPI suggest that everyone should be on ART? Evidence please.

 

[Cort]

Can anyone think of a reason why a positive study by Peterson and Levy, using identical methods to WPI and the same cohort, would help WPI? Would it not just be dismissed as the same group of 'special' patients and the 'Peterson' from WPI? Hardly external validation of the Science paper.

On the other hand, a negative result would be a whole other ball game.

Its difficult to see what would motivate them to want to do this.

More generally, if WPI have something up their sleeve, as Dr M suggested, its well past the time for revealing it otherwise I fear no-one will be listening any more.

Dr. Jay Levy is the difference. He has hundreds of publications to his name on HIV. Just like Stoye perked his ears up when he found out that Ruscetti was on board the Science paper, researchers will listen to Dr. Levy. Basically through the past couple of decades he's shown that he knows how to do a study correctly - time and time again. So if he does the culture everyone will assume he's done it correctly and that his results are valid and if he finds it that will change everything.

I think Levy simply wants to find the virus. Retrovirologists spend their entire careers and all their working hours researching retroviruses. And all of sudden another one pops up... I imagine another human infectious retrovirus should be like manna from heaven for them. We - the CFS population - the group it was found in, are secondary to them I imagine.

Dusty Miller, for instance, is a gammaretrovirologst - yet some people thought he didn't want to find the virus either. I know there's alot of wariness and I agree the stakes are huge - and we must be careful - but I really think its in their own selfish best interest that retroviroligists find the virus.

 

[Cort]

Asleep - I want to draw attention to what I believe is extensive use of emotional, linguistic innuendo in this piece. In sum, these methods would leave a distinctly negative impression of Mikovits and the WPI on the casual reader. I would expect more from Nature.

To whit:

"Now, even some of Mikovits's former collaborators are having second thoughts."

"Nonetheless, the work has rattled his confidence in XMRV's link to both prostate cancer and chronic fatigue."

As others have pointed out, these two statements, in the absence of direct quotes or other reliable sourcing, are unwarranted and unsupported. They provided a clear, unsubstantiated impression that scientific support for XMRV is rapidly waning. I don't believe that the use of such emotional landmines is standard journalistic practice.

You picked up on some things that I didn't on my first reading. First - who are those collaborators (ie the original paper authors) who are having second thoughts? Assuming that that's true - reading between the lines my guesses would be Silverman and Peterson. The paper stated that Silverman is no longer working with Dr. Mikovits however Dr. Deckoff-Jones in her blog stated that all the study authors were still behind the results. Since Silverman has a long history with XMRV and has alot on the line here I would be surprised if he would tell a reporter this....so my guess, based on circumstantial evidence is the the journalist is referring to Dr. Peterson.

"...no group has published a replication of her findings..."

This is potentially misleading phraseology. It leaves a hanging, implied impression that people have tried to replicate but not succeeded. The reality is that no one has yet even attempted true replication. Why not be more objectively precise in phrasing this?

Its not a very good phrase at all actually. I think researchers have replicated the PCR and antibody tests but have not replicated the culture tests.

"Mikovits has dug in, however, attacking her critics' methods and motives."

These emphasized phrases carry very strong negative connotations. This is not an objective description, but rather emotionally charged labeling. Nor does this type of description accord with the much more balanced verbiage employed to describe criticisms from Towers, Coffin, etc.

Well, in her last talk she mentioned a political campaign or something to stop the discovery of XMRV. In earlier talks she said maybe they don't want to find it. In this article she called Hue's paper 'Christmas garbage - a very colorful characterization but still not how most people reference their colleagues work. She's an emotional person at times in a field that treasures neutrality.

I don't think they describe Towers, Coffin, et all in that way because they don't talk that way - they fit the kind of objective, colorless, scientific mold better.

You could also ask why does Judy give them all this ammunition? Given that people are going to characterize you negatively in this field if you say things like that -even if you really believe them - why say them in public? I agree with Kurt that if the WPI had been more neutral and acted more like other Research Institutes (very conservative and colorless, actually) they would be better - not as much fun - but better off.

But I've gotten over that; we're all only human and if Dr Mikovits has some sharp edges then she has some sharp edges. God bless us we all have our own foibles.

"Mikovits says that she's analysed all the papers critical of her work and found flaws in each of them. Nevertheless, she's quick to endorse findings that support her work."

Here, the juxtaposition of "analysed" and "quick to endorse" in different contexts leaves an unmistakable impression that Dr. Mikovits brings variable scrutiny to bear depending upon the conclusions of a paper. What evidence is there for this? Why is it necessary to paint this character-undermining picture of her?

I agree this seemed slanted to me....OF course she endorses findings that support her work and why wouldn't she analyse the papers critical of her work and look for flaws in them??? Of course she would.

 

[biophile]

Unable to wade through the whole thread, but I found this interesting:

Contamination controversy is nothing new to Mikovits. Her doctorate thesis posited that HIV latency monocytes could become active and infect T cells. Researchers argued that Mikovits contaminated the nucleus with cytoplasm or forgot about important sample preparation steps. “I got a lot of criticism from my Ph.D.,” says Mikovits. “It turned out that they were not contaminated, and monocytes could be infected by HIV.”

 

[VillageLife]

The truth is often staring us in the face.

 

[omerbasket]

Dr. Jay Levy is the difference. He has hundreds of publications to his name on HIV. Just like Stoye perked his ears up when he found out that Ruscetti was on board the Science paper, researchers will listen to Dr. Levy. Basically through the past couple of decades he's shown that he knows how to do a study correctly - time and time again. So if he does the culture everyone will assume he's done it correctly and that his results are valid and if he finds it that will change everything.

I think Levy simply wants to find the virus. Retrovirologists spend their entire careers and all their working hours researching retroviruses. And all of sudden another one pops up... I imagine another human infectious retrovirus should be like manna from heaven for them. We - the CFS population - the group it was found in, are secondary to them I imagine.

Dusty Miller, for instance, is a gammaretrovirologst - yet some people thought he didn't want to find the virus either. I know there's alot of wariness and I agree the stakes are huge - and we must be careful - but I really think its in their own selfish best interest that retroviroligists find the virus.

You can see it from the opposite side: They, the experienced retrovirologists - some of them are experienced gammaretrovirologists, have worked on retroviruses for decades, only to see other scientists finding the human pathogenic retroviruses, taking the glory from them? Even a retrovirologist which already found a human pathogenic retrovirus might feel: "hey, untill now they were two human pathogenic retroviruses, and I found 50% of them. Why would I want that number to decrease to 33%?".

It's all possible and we should not convict based on suspicion, but we should also not be naive - and therefore, whe should be suspicious, in my opinion. Anyway, in the studies until now it didn't even come to that: It's not that we say: "You faked the results of your replication study". It's that we say: "you have not done a replication study, and we have no conclusive proof that had XMRV or other MLV-related viruses been in the blood of the people that were checked, you would have found them". Same thing goes with Levy: He should do a complete replication study, including collection (storage is not reasonably possible, since we wouldn't like him to store it for 3 years and then check it, at least not currently), preperation, patient selection and assays - all of them should be done exactly, 100%, like they were done in the "Science" study. Only then would we even come to decide whether we should believe him or not (right now I tend to believe that he would not fake the results of his study).

Saying words like "culture" or "patients with post exertional malaise" is far from being enough. Since we don't know what can go wrong here - we should reproduce the entire process, because we don't know what could get us the wrong results (and that's a possibility, since no one has a method that is proven to be able to find HMRVs in clinical samples whenever it's there). If he would do a complete replication, besides the 3-year storage thing study and would come up with negative results, he would be able to say that his study is strong evidence against what the WPI found, unless the 3-year storage is what makes the difference without causing contamination (of antibodies ).

 

[omerbasket]

Its not a very good phrase at all actually. I think researchers have replicated the PCR and antibody tests but have not replicated the culture tests

Nobody has replicated any of her tests - since saying "nested PCR" or "serology" does not mean that you've replicated the assay. To replicate the assay you have to do everything the same - same type of assay, same primers, but also things like temperature, number of cycles etc. Everything should be the same.
About serology - I doubt that someone even replicated the WPI/NCI's serology assay in general - not to talk about doing every little thing the same as they did.

I don't think they describe Towers, Coffin, et all in that way because they don't talk that way - they fit the kind of objective

Wow... Hold on there. Did you just call Greg "I've proven that XMRV does not cause ME/CFS although I didn't prove it and although since I didn't prove it I could not write it in my scientific paper, and I could only say it to the journalists since my subjective opinion is that XMRV does not cause this disease" Towers "an objective scientist"?

 

[Marco]

Currer

As I already stated - I'm quite content to wait. But the vaccuum seems to be filled at the moment by a succession of papers suggesting but not proving a range of scenariois that would invalidate the Science paper. This is not without its effects.

Two examples. We were recently told that Dusty Millar had placed a planned study on ice. Initially, we were told, because of negative feedback from some quarters and latterly because of the recombination paper. Secondly, as you may already know, NICE have concluded that there is no need to revise the UK treatment guidelines for ME/CFS in the light of the PACE results and the absence of any other evidence arising. So UK patients are stuck with CBT and GET until at least 2013.

Cort.

As for a Levy/Peterson study, I don't doubt they want to find it. But will Levy make that much difference? After all you suggested that Ruscetti's name carried a lot of weight and yet that didn't stop the doubters, Stoye included.

On the other hand, what is clear is that it is currently unclear what is making the difference between consistently finding XMRV or not. Until this is known (hopefully the BWG will crack this) it strikes me as dangerously premature to attempt to replicate WPI's methods using the same patients when any failure to replicate the results will most likely be seen as the missing proof necessary to invalidate the Science paper.

If this goes ahead, will they be working in consultation with the original Science paper researchers given that methods have apparently progressed in the interim?

 

[Cort]

Omerbasket - It's not that we say: "You faked the results of your replication study". It's that we say: "you have not done a replication study, and we have no conclusive proof that had XMRV or other MLV-related viruses been in the blood of the people that were checked, you would have found them". Same thing goes with Levy: He should do a complete replication study, including collection (storage is not reasonably possible, since we wouldn't like him to store it for 3 years and then check it, at least not currently), preperation, patient selection and assays - all of them should be done exactly, 100%, like they were done in the "Science" study. Only then would we even come to decide whether we should believe him or not (right now I tend to believe that he would not fake the results of his study).

Good points. We'll see about Levy. It will be interesting to see how far he goes in replicating the study. Does he use all the same materials? All the same steps? I don't think the research community feels the need to do every single step exactly because I don't think they've ever found a virus in which if you don't do what they believe to be really minor, minor things things the same you can't find it.

I guess what I'm thinking is that they have identified the big steps where they know that changes can make a difference in finding viruses and I assume (a dangerous word!) that they are looking at those in XMRv. The really 'little' stuff that doesn't seem to make a difference - we'll see how Levy does with that. Hopefully it will be as close to the original WPI study as possible. That will be an interesting study indeed.

 

[Angela Kennedy]

Wow... Hold on there. Did you just call Greg "I've proven that XMRV does not cause ME/CFS although I didn't prove it and although since I didn't prove it I could not write it in my scientific paper, and I could only say it to the journalists since my subjective opinion is that XMRV does not cause this disease" Towers "an objective scientist"?

One big LOL there! Omer has a very good point.

We have to understand, I think, that authoritative, dour, even dull types may fit cultural stereotypes or assumptions of 'objectivity' in a world where women in science (or the public sphere, for that matter) have a difficult enough time 'fitting in' (however they present/conduct themselves is considered 'wrong'): but the authoritative type itself is a chimera, a 'playing a part', that cannot presume to be an accurate representation of 'objectivity'.

This community more than others, perhaps, needs to get wise to social constructions of scientists and the ontological problem of claims to objectivity. If we were, we would not even be having these conversations about people's alleged demeanour- because they are irrelevant.

 

[Esther12]

Demeanour isn't irrelevent to other's perceptions though, and science is still a social process. I don't think it will matter for XMRV, as there should be clear and objective evidence, but for other areas of CFS research, the way people present themselves can matter a lot. Wessely's good at presenting himself as a sophisticated academic, and that will encourage many people to treat his views more favourably.