A Critique of WPI Research on XMRV in ScienceBlogs, from NYTimes

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I have come to realise that there are 'doers' in life (Dr Mikovits) and others that sit on the sidelines and complain and whinge ...but actually 'do' nothing! (guess who!) EBV's oxygen is attention, everyone has a right to say anything but hopefully one day she will be a little sorry for the way she said it. Dr Mikovits has found the virus, it is perhaps a little tough to expect her to know all the answers straight away, we are really at the very edge of potentially an enormous find and I just think that it is going to take a lot of time for us all to understand what this really means. Thank you for posting this, I did not know about her (relatively new to all this!) and I will be avoiding her in the future jx
 
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thefreeprisoner

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Can people not link to ERV's posts directly please? The more we link to her, the more she rises in the search engine rankings.

UNLESS - and this would be very cool - please whenever you link to her, use the keywords scientists with vested interests in the link. Like this:

Scientists with vested interests

If we do that enough, when somebody does a search in Google for "scientists with vested interests" ERV will appear top.

Rachel xx

PS: Here's one we made earlier: George Bush and the Miserable Failure google bomb
 
K

Knackered

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Can people not link to ERV's posts directly please? The more we link to her, the more she rises in the search engine rankings.

UNLESS - and this would be very cool - please whenever you link to her, use the keywords scientists with vested interests in the link. Like this:

Scientists with vested interests

If we do that enough, when somebody does a search in Google for "scientists with vested interests" ERV will appear top.

Rachel xx

PS: Here's one we made earlier: George Bush and the Miserable Failure google bomb

I'll second that.
 

kurt

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One thought raised, reading Kurt's reaction, is to wonder whether we have failed somewhat to explore on this forum these alleged flaws in the detailed methodology of the WPI study. Kurt, you seem to be agreeing they found something but whether it was XMRV or an MLV or something else, possibly endogenous, is very much an open question. That appears reasonable if ERV's queries are valid, but then it becomes crucial to go into all that detail and to define precisely what other possibilities might turn out to explain the WPI findings. ERV doesn't seem to be presenting any kind of rival theory to explain the test findings (which says a lot btw), but I have this sense that if one defined, for each test, what the other possible explanations of positive results might be, if you took all the results together then you'd still end up with something which, if not XMRV, is still evidence of a probable pathogen implicated in ME/CFS.
In other words, I'd love to see the scientists on this forum go through ERV's challenges point by point and explain to us what they might mean.
Mark, You are right, this needs to be done, I have a lot of data and should share, but definitely NOT on this thread, don't want to be connected with ERV's diatribe. Maybe I should start a thread for that, I am certainly not the last word on this but do believe WPI found something and that rational scientific discussion about the Science article has been hijacked by the pent-up political anger in the CFS community, and that may slow the discovery of what has really been found. You just can not 'vote' on this, it is not something that needs 'support' like PWC need. Support for XMRV is unnecessary at this time, that hypothesis must stand or fall on its own merits. PWC need support, but that is different.

This is science and good scientists are just as often proven wrong as proven right. I think that history will show that WPI had some things right and also got some things wrong. That is unrelated to public support for ME/CFS, we do not rise or fall on the coat-tails of WPI, we have merit already on our own and eventually I hope there are class action lawsuits against the perpetrators of the public disrespect for PWC. Flash mobs will not solve CFS, and although they would like to there is no guarantee WPI or any current research group will solve CFS. Anyway to my knowledge WPI has yet to produce any cures... There may be things we just do not know, the science may not be there yet for CFS to be solved (thanks to above mentioned public disrespect for CFS and the human rights abuses of PWC by government, medicine and the press).

Her science is incomplete. Many of the theory's she presents lack all of the relevant data she often chooses a few bits and pieces and attacks those without either understanding the context from which they are taken or ingnoring the bigger picture. This installment of her blog is a prime example. She talks about altering the DNA in a way that would cause HERVs to become active or to get a blob of goo. Neither of these things happened with the XMRV finding otherwise you would find the fragments in the healthy controls as well.
Actually her science is not the problem, she raises some valid issues. The problem is all the bravado and attack journalism. She seems to have some respect for CFS, and has some book learning about research, but clearly does not appreciate the complexity of real-world research. She might be right, WPI could have made some major errors, but to assume that if that is the case WPI is simply trying to con the CFS world is outrageously cynical. If she knew the distress CFS causes to a family that is trying to help a member sick with CFS she would realize that WPI's motives are exactly what they say they are, but motives do not protect any research group from the trial and error process of science. And certainly there are financial and business issues in the survival and growth of WPI as there are in any research group, but that is life under capitalism and therefore seeing someone pursue business interests along with science is not a sign of compromised ethics, it is a survival tactic we all must use in our own ways.
 

Hope123

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This is a 23-year-old hiding behind a psuedonym to post her thoughts on the Internet. My background is biology and although not trained in virology, some of her arguments aren't very coherent and do not make sense. If others knew who she was, she's not going to get much respect or collaboration from her peers. REAL researchers use their actual name and stand by their work and ideas. It's fine to point out the flaws in a study but inflammatory attacks aren't a good way to convey your ideas. Best to ignore such persons IMO as there are bigger fish to fry.

I also agree with George's statement regarding the know-it-all attitudes of some young researchers as I've seen some get their comeuppance. Some of the best scientists are also some of the humblest.
 

Cort

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I think she does have some points and we've discussed some of those - the WPI or rather Dr. Mikovits could have been a bit more cautious in some of her remarks and less cutting in others. That's somewhat irrelevant though; what matters in the end is the science. This is the passage from what's her name that concerns me:

- Lets say you isolate a retrovirus from a sample from 1984. The sequence from that virus is not significantly different from sequences you are isolating from patients 25 years later. If the virus does not mutate, why could the British group not find MLV sequences we know are conserved? If this virus does not mutate, why would the PI looking for this virus be worried about PCR giving 'false negatives'?
*sigh*
If the virus 25 years ago is so similar to one at present then this virus is changing very very little - which makes one wonder why one would ever expect researchers in different geographical areas to be looking for the sequences that are different from the ones the WPI found. That is one prominent explanation for the different IC results.

I think one mitigating factor is that the virus is apparently found in very, very low numbers - which obviously makes it more difficult to find. Perhaps you need to use exactly the right techniques to find it; Dr. Mikovits did say they searched multiple times for the virus using PCR in some of those patients using their technique and my sense is that she suggested that perhaps IC just missed whatever is there. She noted that the WPI took large amounts of blood because the virus was difficult to find.

She dismissed Cooperative Diagnostics because they use small amounts of blood. CD says they have a very, very sensitive technique and they could find the prostate cancer XMRV even when it was present in very, very small amounts (but not WPI's XMRV). (I gave them quite a bit of blood though and I know they searched Kurts blood extensively). It would be great to get these parties together face to face!

I wonder if we know how genetically uniform the virus really is; they've only fully sequenced 2 virus's ; Dr. Mikovits said they're working on sequencing many many more if I got that right.

There are definite puzzles! Still the fact that they were able to culture the virus and watch it infect uninfected cells seems to mean that they found something infectious - that appears to me to be the key fact here. Throw away the PCR and you still have something thats penetrating and infecting cells - apparently not an easy thing to accomplish in the retroviral world.
 

CBS

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New Thread?

Mark, You are right, this needs to be done, I have a lot of data and should share, but definitely NOT on this thread, don't want to be connected with ERV's diatribe. Maybe I should start a thread for that, I am certainly not the last word on this but do believe WPI found something and that rational scientific discussion about the Science article has been hijacked by the pent-up political anger in the CFS community, and that may slow the discovery of what has really been found. You just can not 'vote' on this, it is not something that needs 'support' like PWC need.
Kurt,

I would love to see a new thread on this. I feel comfortable with the methodological issues but don't have the virology/biology background to really contribute much. Your thoughts and ideas would be very welcome.

Shane
 
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I don't think Abbie Smith has thought through the long term consequences of what she writes on her blog. It doesn't seem smart for a graduate student to aggressively make enemies in her own field. Perhaps she is planning on making a career in blogging, rather than the lab.
 
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thefreeprisoner

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Yep you're right thefrug.

Every time I read an ERV comment and get myself all worked up, I just have to remember this (it's a quote from one of the comments on her blog):

ERV: "No one has provided evidence in molecular or epidemiological form that XMRV causes CFS."

Commenter: Yet! SC is right, you're awfully confident that you know more than the big boys on this. I don't get it, but, *shrug*.

ERV: "So you can either stay on ERV and learn something (like how XMRV didnt come from vaccines, you know, the post here you havent commented on because youve been so busy b****ing like an idiot), or waste your time chasing a lark. To emphasize once again, I really couldnt possibly care less."

Commenter: [blasphemy expunged] ERV, you sound like sociopath, not a scientist. SC has brought up valid points, respectfully - who is b****ing like an idiot?

OK, we get it, it's your sandbox. I'm interested in your topics, but I'm leaving because your personality is freaking me out. Good luck with that.
Hurrah! It's great to see a scientist tell her off like that. My thoughts exactly, were I confident enough in the science to say them. Obviously this guy is.
There is so much of the Bill Clinton "I did NOT have sex with that woman" about her postings...

Rachel xx
 

Lily

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ERV, the sociopath

I think the commenter who said she sounds more like a sociopath than a scientist was really right on! ERV is one scary lady. She'd probably boil someone's bunny!:eek::eek:
 

CBS

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The correct term for anyone that you cannot leave the bunny with is "borderline." And yes, I agree. I'd hide the bunny.
 

muffin

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Then keep punching back

on what this little stupid sociopath says. A grad student of all of 23 years old? WHO would listen to a stupid child? Smack her silly. She's in the real world now, so let her learn how hard and nasty the real world really is. HIT HER HARD.
 
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thefreeprisoner

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I am just wondering.
Does ERV's behaviour seem just a little autistic to you?
I am wondering if she feels like she would be losing a part of herself if autism is discovered to be caused by XMRV, and is having a rally against it.
That sounds warped... but I can't think of many other explanations for the warpedness of her posts.

Rachel xx
 

Mithriel

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the anonymity of the internet can bring out the worst in some people. They don't have to face the people they are criticizing so it is safe to say anything.

This feeling of power can go to some people's head.

Mithriel
 

natasa778

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Does ERV's behaviour seem just a little autistic to you?
I am wondering if she feels like she would be losing a part of herself if autism is discovered to be caused by XMRV, and is having a rally against it.

That is spot on Rachel!

Even if she is not autistic herself, most of her fan base consists of such people, and her ego depends on feeding their fantasies.

And she is not even the most hateful blogger out there, just wait till any actual papers are published on possible links of xmrv in autism... oh you 'ain't seen nothing yet'. The worst is yet to come as far as hateful blogs are concerned.
 
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Gerwyn

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I hope this mean-spirited blog post is not an example of what is to come when the critics start to dissect the Science article. Mikivitz's talk was helpful, it clarified some of the methods used in the Science article. Just as some of the supporters of the XMRV hypothesis have been overly optimistic, some of the critics will be overly pessimistic.

But although the tone was pretty antagonistic, there is some truth I think in some of the criticisms mentioned, several of those issues have come up in discussions I have had with a researcher, they are real problems. Unfortunately there are other issues as well, more than just the few mentioned here.

WPI is finding something with their MuLV antibody tests, but just what they are finding is not easy to prove yet. The conclusion that they are finding XMRV and that is causal in CFS appears to be based on a lot of assumptions right now.

One of the reasons multiple confirmation studies, both replication and validation studies, are important is that a consensus must be reached by people who are not biased in any way, and who have evaluated ALL of the issues raised by both sides in the debate over a new scientific finding. Until that happens XMRV remains an interesting hypothesis and I think the CFS world would do well to treat it that way. In my opinion that is also what Mikovitz was backhandedly requesting in her presentation, she of course is biased and optimistic about her research, but at the same time she made clear that commercial testing is premature. That maybe has become more obvious the past few months to everyone.
i agree kurt but this work is not balanced or particularily accurate if one complains about WPI methodology then the gross flaws in the IC study should be highlighted using cells that XMRV was known not to affect,cones with no5'end etc
I cant understand a lack of mutation in something using reverse transcriptase either having said that the epigenetic mechanisms are not that clearcut normal methylated dna/ histone and metnase might well provide an inserion mechanism for a reto interference could potentially promote its release whatever they have found is infective and carries at least one unique sequence consistently The IC method for detecting possible serotypes is a joke.As for conflict of interest there is one hell of a difference between trying to cure your daughter and protecting your reputation and sources of monetary recompense
 

Esther12

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Some people here seemed keen to focus on the potential problems with IC over WPI though. We all have our biases.

I think ERV is just part of the whole 'shock jock' approach to science which seems to have grown up with the internet (or made it more visible). Some people working in science seem to think that the caution and modesty of science has made it unappealing to the masses, and that they need to compete with the Limbaughs of the world in order to encourage people to learn about science. I don't really like it, but I feel able to look past the presentation and see what content there is. When people present themselves with this sort of anger and exagerated certainty it always serves to discredit them - but they might still have something worthwhile to say.
 

boomer

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Well said Esther12. Studies show that a team that has very diversified members produces better results than if everyone thinks the same way.
You can't expect someone of 23 to have the maturity of a 30 year old. Her behaviour was very childish though.