Nature article about Judy Mikovits and XMRV

[free at last]

Hi freeatlast,
I always thought your posts were good amd I enjoyed them the most because you looked at things emotionally but could really put your finger on what was going on.
If XMRV does not work out Dr. Mikovits will suffer more than us because she has been the public face of all this.
There is nasty feral instinct in people to attack people when they are down or outsiders - we know this because its OK to criticise a CFS sufferer, and God knows the attacks we have had to put up with, but not, say an MS sufferer, whose illness is accepted by society - so we have suffered as victims a lot.
I would not want to see our disappointment turning into criticism of Dr. Mikovits. Of all people we should be the ones to know not to victimise. I see a some people readily turning to criticism on this thread. Don't we know better than this?

PS what does lol mean - I have never been able to work it out!

Thanks again currer, laugh out loud, its a text thing. You know Currer i dont think ive stood up for judy enough lately. i let my dissapointments take first place.

Your so right of all the people to condem Judy, when things are not going well for her. we should know better i agree. Shes put herself on the line for us i belive. And continues to do so with a onslaught of researchers trying there hardest to prove her wrong. some might be just doing the science. But your a naive bunch if you really belive politics isnt rife in science, in scientists, and health care professionals.

Everything we have had to put up with, she and Annette are now having to put up with. to champion our cause, is to be ridiculed and proven wrong just like we are. Judy now knows how bad the politics really are JUST LIKE WE DO. Shes feeling it first hand. JUST LIKE WE DO. But like us shes disgusted by the worldview. and again like us, isnt afraid to speak out. Some call it un profesional, boo hoo. Its harming our cause.

Ok for years we have wanted someone to stand up, and just for once tell it like it is, JUST LIKE WE DO. But when Judy does it. Somehow its wrong, she shouldnt be behaving like that. everything thats said about us, is being said about her. but heres the kicker. FROM SOME WHO SHES TRYING HER HARDEST TO DEFEND AND STAND UP FOR.

Talk about hypocrits.Just like us maybe shes had enough, and is angry. oooooooo so sorry for being human, instead of a PHD ROBOT.

Im glad shes speaking out, im glad she puts her foot in it, Its the one resason so many love and admire her, to have that courage even though she knows she will be attacked further. Dont want to bring religion into this, but what did they do to jesus ? Well the romans are still around it seems. If things were going well for judy, if all was panning out nicely, and treatments becoming available that were working. what would that same crowd be saying then ? theres a word for people like that. two faced.

Sure shes done things wrong. sure she speaks with her emotion and anger the way many do on here. and scientists dont normally do that. well hello. Maybe for the first time someone in a position of power. finally gets the injustice, and abuse, and politics, that has destroyed so many with this illness. And what do we do when that person finally stands up and says enough is enough. shes torn down by the very people, shes trying so hard to defend.

I dont care how anyone wants to intellectualize her behaviour into a sordid un professional dangerouse. pursuit. i think shes fine just as she is, WARTS AND ALL if you dont like the warts, stop looking at them. and if anything does go right for her. dont even try jumping on the bandwagon of celebration. Because guess what maybe you dont deserve it. You know your true friends when the chips are down. and we are starting to see the friends and foes now.

Good, show your face. so we can see who you are. Even if judy is wrong about xmrv. I still support what shes tried to do. at least just for once. the world stood up and wasnt so sure of itself. the way they will be again if she fails.

Better to be considered for a day, than a eternity of neglect.

Thanks Judy and Annete for trying so hard.This was meant to go right for us. the proof of science, coming from the love of a sick child ( Andrea ) to prove us all right. to right the wrongs of the past. to bring a end to the suffering with treatments that work. If she fails, we all fail. if you cant see that. then i think, anger not love has taken over you. Hey im obsessed by Wessley, i think hes a naive baffoon. If one with a lot of power. Now thats dangerouse . Judy is getting eaten by all the sharks. just like us. some of those sharks are from her own family. terrible really. Rant over. if you dont agree. pull these words to shreds. because i dont care. just like Judy it seems.

 

[currer]

This post is a credit to you freeatlast. Well done!
I couldn't agree more.

It's so good, I'm going to print it off and keep it.

 

[FunkOdyssey]

Yeah wow, bravo free at last. +1 to your whole post!

 

[asleep]

Yes, beautiful post free at last!

There seems to be a strong push recently to assassinate the character of Judy and the WPI. We've seen it in the slanted Nature articles, the hit piece by Trine, the interview by Brent "I have no moral issue charging destitute sick people $400 for a defective test" Satterfield, and the recent influx of some of ERV's fellow misanthropes.

This character assassination tends to take the form of very serious feigning of "concern" over a variety of irrelevant or manufactured issues: that a few patients will take ARV's prematurely; that uppity patients critiquing science will somehow undermine the entire heretofore hallowed process; that an institution aimed at helping people that no one else will is guilty of "tin foil hattery" for venturing beyond socially accepted bounds of thought; that a very modest amount of money and resources will have been "wasted" on XMRV (if it legitimately doesn't pan out) by a scientific establishment that is otherwise extremely efficient with time and money; that the ME/CFS community is being led down a research dead-end (as if these same "concerned" people ever cared about the numerous psychobabble dead-ends); etc, etc.

But these aren't real "concerns" or real "issues." They are guilt traps, dressed up as "concerns," designed to make people second-guess themselves and their only advocates. If you strip away the tone, the emotional coloring, and the rhetorical posturing that serve only to divide and alienate through insinuation, very little of substance is left. A man who dresses up in black tie to break another man's kneecaps is still a thug.

History is full of people undermining legitimate, important ideas with all the gravitas one can muster. There used to be very serious scientists concerned that "nutjobs" complaining about the health risks of smoking would deprive people of its "scientifically validated" health benefits. You get the idea.

I too stand with Judy.

 

[WillowJ]

I'm with asleep. There's a lot of misplaced "concern" out there. The scientific community really needs to buckle down and actually study XMRV instead of criticising WPI and Judy Mikovits and the ME/CFS patients and community as a whole. And if XMRV doesn't pan out, then keep looking for more causes, studying the pathology we do know, etc. They can't/won't do this if they are busy with their little "concerns". The situation will just go right back to us being ignored and maligned and our biomedical researchers being ignored and marginalized.

That is what must be prevented.

And our joining in various criticisms doesn't help (even if some of them were exaggerated and evily one-sided but perhaps not wholly fabricated; exaggeration and one-sidedness is still character assasination; and free at last is undoubtedly right that the reason for JM's outspokenness is the grave human rights abuses that have been perpetuated against us). Joining the criticisms hurts our cause, very much.

We cannot afford for WPI to be discarded like so much trash. WPI and Judy are not trash! WPI and Judy are treasures. Maybe not superheros, but they are definitely part of the solution here, along with Lenny Jason, Staci Stevens, Montoya, Nancy Klimas, etc.

I'm not completely sure XMRV is going to be the answer, and I never have been. I still think it's a possibility, even after the 22Rv thingy. It's a good model, and it needs to be studied all the way to the end.

Lombardi et al.'s original publication in Science was and still is brilliant. Even if it turns out there's some alternate explanation, that was and will always be an excellent piece of work, and they didn't know and couldn't be expected to know the (still hypothetical!) alternate explanation. They did everything they knew how to do, to rule out contamination, very thoroughly.

I haven't gotten tested for XMRV and don't yet plan to (unless I could get into a study), not becasue I don't believe in WPI--I do--but because it may turn out that testing in tissues is a better method. $500 is actually not that much for a medical test but it's not covered, even in part, by Medicare or insurance because it's still considered experimental, and I would rather wait for better consensus on method of testing.

Why? I would rather not deal with possible false negative just now, or a positive that we're not sure the significance of and can't really treat (XMRV doesn't seem to replicate as much as HIV and it's unclear whether HIV medicines would be effective in vivo (in real life) even if they stop XMRV replication in vitro (in a test tube)). I might be willing to be a part of a clinical trial for ARV's, but not a trial of 1.

Bottom line, we need more science. We need balanced science. We need funding. For those things, we need an even playing field. For that, we need a civil discourse and not insults and innuendo.

 

[omerbasket]

Cort, they can think whatever they want.
But the best known way to find if the WPI's finding can be replicated, is to replicate their steps, one by one, as much as possible, and not one bit less than that. This is what I talk about when I say that even scientists today have to be hubmle: The fact that they think that something would not matter, even if they have proofs that it did not matter in any ofthe other viruses known until today, does not say that it would not matter here. To say that it would not matter here they would have to prove it. And not just to get evidence that supports it - but to prove it. Since proving it is very very very hard, and is currently a waist of time, I suggest they just focus on reproducing all of the steps shown in the "Science" paper, altough it is pretty hard too.

 

[Dan_USAAZ]

I've been skeptical of Mikovits from the start, when WPI claimed finding 67% of CFS patients had XMRV and then quickly changed that number to 95% or 98%.

Her behavior over the last year, with lashing out at critics, has proven to be very unprofessional. Really, her lab isn't doing anything magical in order to get the results they got. Other labs should be able to replicate it with little problem.

Now, her treatment of Peterson, mentioned in the article, is yet more proof of her unprofessional and unethical behavior and really comes as no surprise to me.

As far as I'm concerned, something very fishy is going on...

JPV,
If you had taken just a few seconds to read what the percentages represented, you would not have any reason to be skeptical. The 67% that was cited in the Science paper was based on a culture test looking for active virus circulating in the blood. The subsequent 95% statistic was based a serology test that looks for XMRV antibodies in the blood. I do not believe the serology test existed when the research for the Science paper was conducted.

As far as the WPI quickly changing the number from 67% to 95% or 98%, you are comparing the date that a peer reviewed document was published in a journal to when an announcement was made by the WPI. In real time, it may have seemed like they quickly changed the number, but in reality there were many months between these two testing events.

As far as the tactics (unprofessional and unethical behavior: your words) used by the WPI, I am perfectly fine with what they are doing. After 25 years of neglect, the WPI has gotten the whole world looking at ME/CFS as a disease and not a personality disorder.

The only thing fishy going on here are the motives behind your posts…

 

[WillowJ]

The one thing that marked Einstein out from most of his peers was his ability to get along with those he disagreed with and to play in public the 'everybody's favourite uncle' role - there's not much sign of Mikovits being able to do either - or at least a gender appropriate version in the latter case.

(bolding mine)

Oh good grief- 'gender appropriate'.

I think this is causing some confusion. Pretty sure what IVI meant was that Mikovits, being a her, can't be a "favorite uncle" and the gender part meant to recast as a favorite aunt.

However, as I said in my above post, I don't agree with criticising Mikovits like this. Nobody gets along with Myra McClure except the rest of the Wessely school and other corrupt persons, or ignorant persons... and we would be justly upset with Mikovits if she fit into either of those categories.

I just don't think there's any gender discrimination going on here at PR.

Hope that helps.

 

[insearchof]

Clearly a matter of personal perception of 'value' but $200+ is a 'substantial sum' to pay for a test that has no scientific validity.

Are you confusing scientific validity with regulatory approval ? Or perhaps we are just considering this from divergent view points. I acknowledge however, that the term itself (scientific validity) is quite broad and I believe that we would hold divergent views on the subject matter. So it might be best left there.

it's simply a matter of belief whether one accepts that the WPI test is 'of something' or not

No actually, it is much more than that when people who have tested positive on this test, are responding to antiretroviral treatments and reclaiming their health, in a manner they had not experienced previously. It will be interesting to see what science has to say in the future, if these numbers and results swell. It is also interesting to note, that calls from some within the scientic community for clinical trials has largely been ignored. Scientists in some sectors say, that this would be another important piece in the puzzle. I note one scientist at the CROI publicly addressed the matter once again, and wanted to know why this was not progressing. Indeed.

You are confusing the WPI test with broad scale investigations that followed the proposition presented by Mikovits et al that XMRV was a blood borne pathogen. If the original work overstated the case, one can not justify that orginal work on the basis of the subsequent work. Only after the subsequent work has achieved consistent reproducibility would a diagnostic test be approriate for non research purposes.

Actually, I was looking at ''justifiable'' in a much larger context than you have attributed to it here.

I am sorry, but how might the origional work have overstated the case?

If you are refering to XMRV it was discovered by DeRisi, Silverman and Klein, before the WPI was even in existence. To date it's not clear that WPI has achieved any scientific 'discovery', and until some other research group finds some way in which to confirm the WPI work, that's the way it will remain.

Your correct IVI. Cognitive malfunction precluded me from actually giving full expression to what I wanted to convey. Its funny, sometimes you think you get it all out and then you see the looks on peoples faces. Its much harder to pick up on such immediately this way. So let me finish what my brain would not allow me to do so on that occasion.

At the time of publication in Science, Lombardi et al published their findings of an isolated replicating virus in 67% of a defined population group (CFS) as well as in approximately 4% of the healthy population. From memory, Silverman et al had it in tissue and never in those numbers. Publishing findings of a replicating blood borne virus having such a high association in a particular population co hort, as well as in the healthy populace - is what made this the biggest discovery since HIV. Therefore it was highly unlikely, that this was going to slip under the radar with little or no criticism as you suggested.

You don't think that Pons and Fleischman were left looking somewhat ridiculous in the wake of their half baked claims, something that has never left them given that no one has ever reproduced the P&F results no matter how diligently they've tried ?

I have not read their claims IVI, but I don't need to, to appreciate that the brightest human minds, produce material well ''before its time'' and the content can appear to lesser mortals as 'half baked''. There are plenty of examples to draw from. Einstein probably looked ridiculous and his ideas half baked to many early last century -when they were unable to substantiate and give legs to a lot of his claims. The Australian Scientist Marshall, was also painted in the same unflattering fashion you have painted Pons and Fleischman in, for his supposed half baked claims as to the cause of stomach ulcers. Those half baked claims however, proved correct and he collected a Nobel prize for his efforts.

I think there is a saying IVI that goes something like this: the greatest minds of men, receive violent opposition from the most mediocre.

 

[SOC]

You are of course free to accept whatever you want, but Peer Review is not a 'recommendation', it's simply a process of sorting out some of the 'chaff' from the 'wheat'. Peer Review most certainly is not a validation process, and the nature of testing that is acceptable for a research project may fall very far from what is aceptable for a validated diagnostic test. For a useful overview of the limits of Peer Review: http://resources.bmj.com/bmj/pdfs/moher.pdf

The only way that you, and any peer reviewer, can gauge any aspect of a biomedical study is by examining its written report, that is to say, the submitted manuscript. You will have no opportunity to solicit additional information from the authors. This has some intrinsic problems. It is possible that a study with many biases can be well reported. Conversely, it is also possible that a well designed and executed study is poorly reported.

IVI

[my bolding]

Don't we know this is not strictly true from the experiences of both Lombardi et al in Science and Alter/Lo in PNAS? How many times was each sent back for more info by the reviewers?

It is not entirely clear to me what the source is of the document you cited and I have neither the energy nor the interest to pursue it any farther than the fact that it's found at the British Medical Journal website. Is it their policy? Does the same apply to the top journals such as Science and PNAS? Apparently not.

I have reviewed technical papers for professional journals not in this field. Any decent expert reviewer can distinguish a biased, but well-written report from a scientifically well-designed and performed study with a well-written report.

Based on the research reports we've seen coming out of the UK lately, it wouldn't surprise me that this is some policy common in the UK. I've seen much too much biased, but slippery-written technical reports from UK labs, so it does sort of fit that their review policy can let through biased research.

When I see ME/CFS research out of Reeves, Towers, or McClure published in Science, PNAS, Nature, New England Journal of Medicine or other high Impact Factor journals, I'll believe they are well reviewed.

Sounds like Baffle 'Em With Bullshit is alive and well in the UK research world.

 

[Angela Kennedy]

(bolding mine)



I think this is causing some confusion. Pretty sure what IVI meant was that Mikovits, being a her, can't be a "favorite uncle" and the gender part meant to recast as a favorite aunt.

However, as I said in my above post, I don't agree with criticising Mikovits like this. Nobody gets along with Myra McClure except the rest of the Wessely school and other corrupt persons, or ignorant persons... and we would be justly upset with Mikovits if she fit into either of those categories.

I just don't think there's any gender discrimination going on here at PR.

Hope that helps.

Well- he/she could, of course, had just said 'Aunt'. That would have been clear.

Unfortunately, gender stereotyping of 'appropriate behaviour' has been a staple of this 'discussion' and the way Mikovits has been treated. It's been the 'invisible' elephant in the room. There may well be a hidden gender discrimination going on in this discussion, I'm afraid. I think there might be.

The fact he/she used the term 'gender appropriate version' implies there is such a thing in terms of 'role': that women, and men, should behave in certain ways. THAT, I am afraid, IS gender discrimination.

 

[Marco]

IVI

You seem like an intelligent bloke (ess).

Why don't to put your undoubted critical faculties to good use and pop over to the PACE trial thread where you'll see some real Bad Science.

 

[In Vitro Infidelium]

I think this is causing some confusion. Pretty sure what IVI meant was that Mikovits, being a her, can't be a "favorite uncle" and the gender part meant to recast as a favorite aunt.

Yes.

The problem with accusations of discrimination is that one can never answer them without the accusers feeling even more deeply confirmed in the rightiousness of their cause - only by obeisance to the 'morally' superior position of the accuser can one hope for absolution of the perceived sin. Not that I'm complaining, it's pretty standard internet behaviour alongthe lines described by Godwin's Law (substitute prejudice of choice for Nazi and all bases are covered) and one has learn to live with it. The interesting thing though is how the technique invariably turns attention from subject to poster, and in this thread with nice irony it serves to deflect from a discussion about the personal qualities of an individual, derived from an article, onto the personal qualities of a poster who has no connection to that article. And Irony is its own reward.

However, as I said in my above post, I don't agree with criticising Mikovits like this. Nobody gets along with Myra McClure except the rest of the Wessely school and other corrupt persons, or ignorant persons... and we would be justly upset with Mikovits if she fit into either of those categories. I just don't think there's any gender discrimination going on here at PR.

More irony, in that the first post I wrote on this thread acknowledged that Mikovits' 'style' was not in itself an issue in her role as a researcher. There is an issue though about how a scientist who has a 'communciations' brief in their job description, performs in achieving and maintaining professional alliances. Realistically, whatever the predominant 'male-archy' may or may not demand, Mikovits has to build those alliances if WPI is to be a longer term player in medical research, it hardly seems controversial to say that Mikovits doesn't seem well suited to doing that.

IVI

IVI

 

[Angela Kennedy]

.
The problem with accusations of discrimination is that one can never answer them without the accusers feeling even more deeply confirmed in the rightiousness of their cause - only by obeisance to the 'morally' superior position of the accuser can one hope for absolution of the perceived sin. Not that I'm complaining, it's pretty standard internet behaviour alongthe lines described by Godwin's Law (substitute prejudice of choice for Nazi and all bases are covered) and one has learn to live with it. The interesting thing though is how the technique invariably turns attention from subject to poster, and in this thread with nice irony it serves to deflect from a discussion about the personal qualities of an individual, derived from an article, onto the personal qualities of a poster who has no connection to that article. And Irony is its own reward.

As agonising as this might be for you, sometimes there are justifiable concerns about various forms of discrimination, and the 'accusers' are justified in expressing those concerns. This is one of those times. There isn't even a delicious irony going on, and in this forum at least, few Pavlovian responses of fury against the hapless poster accused of proving some form of 'Godwin's Law' (this isn't Wikipedia you know!)

Invoking Godwin, comparing the replication problem of XMRV with cold fusion, it's like a little checklist of lame stock accusations of smart-alec ad hominem that is the MO of the new breed of 'cookie-cutter inconsistent skeptic' inhabiting the realm of da internets. I'm thinking of running a book on what stock ad hominem is coming next: 'contempt of the mentally ill' is a common one for the poor old ME/CFS community...

More irony, in that the first post I wrote on this thread acknowledged that Mikovits' 'style' was not in itself an issue in her role as a researcher. There is an issue though about how a scientist who has a 'communciations' brief in their job description, performs in achieving and maintaining professional alliances. Realistically, whatever the predominant 'male-archy' may or may not demand, Mikovits has to build those alliances if WPI is to be a longer term player in medical research, it hardly seems controversial to say that Mikovits doesn't seem well suited to doing that.

It is 'controversial' and certainly objectionable when one scientist is being accused of unprofessionalism, incompetence, the whole sheboodle of personal attack she's had to endure from this thread alone, in an excruciating display of special pleading.

 

[WillowJ]

on the other hand, I credit Mikovits' prior alliances with people at the NIH (showing that she does indeed have people skills) with the attention XMRV has gotten so far and with gaining us some important allies, such as Alter, at NIH/FDA.

 

[Angela Kennedy]

Regarding the problem of gender discriminatory judgements of women in particular. Here is a small but key example of the problem I'm seeing on this thread:

http://www.cs.umd.edu/~oleary/faculty/node12.html

Accomplishments are often devalued or credited to male colleagues [4], and characteristics that are considered assets in males are considered faults in women:

Mr. X is assertive; Ms. Y is pushy.
Mr. X is persistent; Ms. Y is stubborn.
Mr. X thinks creatively; Ms. Y is easily distracted by tangential ideas.

References here:

http://www.cs.umd.edu/~oleary/faculty/node29.html#ref:judged

A colleague of mine, Nirwal Puwar, has researched the experiences of women and racial minorities in 'elite' political 'space'. One of the phenomena she found was increased surveillance of women and racial minorities' behaviour:

http://us.macmillan.com/spaceinvaders

The 'critical' micro-surveillance of her behaviour Mikovits has found herself under, by some in the community itself, is different to the male scientists this community has engaged with (the 'heros' as I hear them get called), and an argument can be made that different judgements are brought to bear in the same way as research has found the above.

On top of this - cynical attempts to discredit her for political reasons have fed into this insidious, socially constructed system of gender discrimination, that people may not even be aware their responses are structured by.

There is more than gender discrimination at play in the various criticisms on display here, but lack of insight into its processes, and/or rhetorical devices of accusing people of proving some sort of Godwin's law, or faux outrage about being accused of gender discrimination (some of my best friends are women!) can mean it happens more insidiously.

 

[FunkOdyssey]

So just 'what does positive mean ?'

IVI

Being positive by VIPdx serology means you are 70% more likely to repond to Ampligen.

http://www.drlapp.net/meLetterMar2011.htm

Cool right?