XMRV and chronic fatigue syndrome: For your enjoyment-- A magic trick.

Ladies and gentlemen, a magic trick*.

I am going to take two pieces of data, from two independent experiments, establishing 'proof' of two different concepts, presented in to different formats and to different events...

... And turn them into the same figure.

*waits for the astonished mummers to simmer down*

In my left hand I hold 'Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome', a Science paper from 2009.

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome

We can ignore parts of this paper-- they have been retracted, as it seems some samples were contaminated in a rather curious (strategic?) manner. Which is fine, because what I want you, the audience, to focus on is Figure 2:

i-2b43758e27bf90730176b0c81aa5fb68-Science Figure 2.png

Specifically, Part C:

i-cb8eb8e265b6b88d61ef774a574e2e46-Science Figure 2, zoom.png

Lets zoom in on it, to get a nice, clear image. Actually, lets zoom in on the bottom part of that figure:

i-c5e626b967ed434d7c79d3980fe7156c-Science Figure 2, zoom 2.png

Its quite clear, there are 8 lanes.

1-- Normal
2-- Normal
3-- 1235
4-- Normal
5-- Normal
6-- 1236
7-- Normal
8-- SFFV-infected HCD-57

Here is the figure legend:

(C) Lysates of activated PBMCs from healthy donors (lanes 1, 2, 4, 5, and 7) or from CFS patients (lanes 3 and 6) were analyzed by Western blots using rat mAb to SFFV Env (top panel) or goat antiserum to MLV p30 Gag (bottom panel). Lane 8, SFFV-infected HCD-57 cells. Molecular weight (MW) markers in kilodaltons are at left.

Not hard to interpret, right? Some cells from healthy donors do not express XMRV Gag protein, a couple CFS patients do express Gag protein, and a positive control does express Gag. It provides evidence to support the claim that CFS patients PBMC are infected with XMRV, and are capable of producing viral proteins.

Nothing out of the ordinary. *wink*

Now, in my right hand I hold Slide #13 from a presentation a Miz Judy Mikovits recently gave in Ottawa at the IACFS/ME 2011 conference, graciously provided to us by Miz Jamie Deckoff-Jones. A round of applause for Miz DJ, everyone!

*waits for the applause to die down*

i-62022694ec7582de8dc72d025444770d-IACFS13.png

Another fairly straight forward figure. Again, 8 lanes:

1-- Normal
2-- 2905 PBMC
3-- 2905 PBMC + 5-AZA
4-- Normal
5-- 1674
6-- 1674 + 5-AZA
7-- Normal
8-- SFFV-infected HCD-57

Again, PBMC from normal individuals do not express XMRV Gag proteins... but this time, though the CFS patients did not initially express viral Gag proteins, when treated with an epigenetic modifier, they could induce Gag expression. Fairly straightforward explanation for why some patients might *appear* to be negative, but with a bit of lab trickery (we do this stuff all the time in labs), we can make a hiding virus come out and play.

How nice for us all, right? *wink*

Lets zoom in a bit:

i-12e861b44c0be2b96d7ad55f5bc59a2d-IACFS13, zoom

And fiddle a bit with the brightness/contrast:

i-79b669f0e379e44949dd75183a5b9b20-IACFS13, zoom, edit 1

Science is all well and good-- Two figures, one providing support of the claim that two patients, 1235 and 1236 are infected with XMRV, the other figure showing two patients, 2905 and 1674 might appear negative, but become positive after treatment with an epigenetic modifier. Neat, but so what?

Well, heres the *really* good part!

Now, watch carefully or you will miss the trick, ladies and gentlemen!

i-a1721540aae8cdd36fda3c6f399e2ba1-Comparison1.png
i-47c7973822ab40942fd40618b2cd9179-Comparison6.png
i-ccc51a5d1fbc3dec63233e07349c8292-Comparison7.png

Thats some mighty fine purple.

But how about an alternative view!!! I think Ive made my point, I just like how the far-right blob looks like a rubber ducky:

i-fa3b2ddc701b2403bd15c5a745534d20-Comparison5.png

*BOOMANDHUGEPLUMEOFGREYSMOKE*

TAH DAH!

Two bits of data describing and explaining to two entirely different things... and yet I can make the two images look identical!

I AM MAGIC!!!

Am I magic...?

...or is this a case of arrogant, bold-faced, lazy-ass scientific fraud perpetrated by an apparent pathological liar?

You be the judges, ladies and gentlemen.

I know what my opinions are, but I would very much like to hear your thoughts.

* Though much of this magic trick is my own creation, the original idea was not mine. That individual/Those individuals do not wish to step forward at this time (and rightly so), but should they ever want to take credit for this observation, I will *happily* give it to them. Its wonderful, something I myself missed.

But to all you frauds out there-- remember this: Dont. Fuck. With. Scientists. Individually, scientists are smart folks. And even smart folks get screwed over now and then. But together, we are always smarter than you.

Always.

Tags

More like this

XMRV is so hot right now. Read the paper on XMRV and Chronic Fatigue Syndrome last weekend: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome My conclusions from the paper: XMRV is capable of infecting humans and producing viable progeny. How…
If Ive said it once, Ive said it a thousand times here on ERV-- Scientists are wrong all the time. ALLLLLLLL the time. Its what we *do*. We make a hypothesis, design an experiment, collect data, and refine the hypothesis, because the original hypothesis was wrong. Over and over and over and…
Just when you think XMRV-->anything could get none more dead, it manages to get deader. When the possibility arose that there was a new pathogen circulating in humans, especially in the human blood supply, lots of labs from all over the world started looking for it. Unfortunately, no one could…
So here are my answers to The Brainstorm Challenge. Some of you got real damn close to the 'answers' I was thinking of, but you all missed a great big one (which I think will make sense to you after I bring it up hehe!) 1-- Lets say youve isolated white blood cells from CFS patients. You treat…

"I've never really read the CFS patient forums much before, so I don't really know if they are crazier than usual over this, or if this is their baseline. But some of them seem to really be going off the deep end over erv's blog. They are starting to remind me of the crazy "nurses" in the "World According to Garp."

Keep your eyes open erv, and don't open any unexpected packages in the mail, etc."

Joe, you are seriously sick.

To ERV,

Maybe you need to quit now with this conversation, it's not helping anyone.

XMRV / HGRVs is bringing the very worst out in people.

Many are arguing and fighting, maybe we should just wait and see what happens.

Best regards, Kate.

âWhen the full history of ME/CFS is written one day, we will all be ashamed of ourselvesâ Prof. Dr. Ola Didrik Saugstad, Professor of Pediatrics, WHO Advisor, Norway

âHopefully, one day, my dream is that our medical community will produce a formal apology to the patients for not having believed them all these years that they were facing a real illness.â Jose Montoya, M.D. Stanford University

News from Norway: Cancer drug Rituximab alleviates Myalgic Encephalomyelitis. In other news the cancer drug Alemtuzumab is more effective than interferons in the treatment of MS, a neuroimmune disease similar to ME.

Yes its true that XMRV-VP62 is over but the continuing research on polytropic gammaretroviruses as found by Lombardi et al and confirmed by Lo et al is far from over ladies and gentlemen.

Bans on ME/CFS patients donating blood and organs are still in effect because:
Identification of Differentially Expressed Viruses in American CFS Patients Probed with a Custom Mammalian Virus Microarray. Judy Mikovits, V. Lombardi, Y. Huang, D. Peterson and F. Ruscetti

"The average chronic fatigue syndrome patient on the day they were tested had between 30-50 viruses; the average healthy control patient had 3 or 4.â Dr. Daniel Peterson, 2008 Swedish Conference."

30-50 viruses plus the bacterial, fungal, and mycoplasma infections found in ME patients and confirmed polytropic retroviruses is why the retroviral research continues. Like AIDS it is the retrovirus plus the co-infection that determines disease outcomes.

euro-me.org/news-Q42011-003.htm?forumid=331851
Quote: A statement from the Norwegian Directorate of Health has been received where they apologise for not having provided the necessary and proper health services to persons with ME.

"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

By Anonymous (not verified) on 24 Oct 2011 #permalink

OOFF.

Shades of Hwang Woo-suk going on here with the copy 'n' paste trick.

Christ on a crutch!

By Mike Kelly (not verified) on 30 Sep 2011 #permalink

*Standing ovations to the trick*
"You should present it in Vegas!"-screams

You are awesome erv.

Honestly the technical terms were throwing me for a loop and distracting me from the main point, so it took me awhile to "get it." I don't necessarily mean to say that they weren't important, or that I'm not simply a poor reader in the mornings, but still.

Show me an agenda and inner-circle labs producing "outstanding" results that no other lab can reproduce, and I'm already suspicious. As for this, I find it to be pretty damning. Watch out for flying subpoenas!

Of course they look identical, they measured the same "impurity" ;). Actually I have no idea how identical those traces could look if you would run the same assay twice.

Imagine what would happen if the mob would find an error like this in Paprotka et al. ;-)

But now, I think this will be downplayed. Another mistake by the postdoc that forgot to switch needles or from that guy that lost some BWG samples.

But how dare you question the integrity of these fine scientists (who question the integrity of researchers who don't happen to agree with them all the time)!

Mu-- If you run the exact same gels (store bought) at the exact same time in the same unit, and did the transfer at the exact same time, it is totally possible to get very similar looking gels (dont count on it, though).

Identical gels? No.

And its not just the bands that are identical-- its the garbage.

I didnt include this figure in the post, but I made it. I highlighted mistakes-- a pipet tip through the well makes a nice vertical drag. Non-specific blobs lighting up. What a strange coincidence that the exact same random mistakes happened in the exact same locations the exact same way!

As RRM stated, Im sure there is a TOTALLY REASONABLE explanation for this. Im SURE it wasnt intentional. But even if it were that damn post doc again-- what does this say about QC at the WPI? What does this say about their standards? What does this say about how carefully and how critically Mikovits is looking at her own work?

LOL. That damn post doc *shakes fist angrily*

Well, in the case of Hwang Woo-suk, the copy 'n' pasted cell photos turned out to be a typographical error - a genuine mistake - but it was still part of a body of evidence triggered an investigation which found a whole bunch of other problems.

There is an old adage that when researching someone you suspect of lying or fraud, that a good indicator is to look at the small stuff first. Because (1) someone lying about the big stuff will typically lie about the small stuff too and (2) they will take less care in covering their tracks with the small stuff.

It isn't hard and fast proof, but should certainly raise eyebrows and requires deeper digging, preferably on a formal basis (as happened with HWS).

Yep, those artifacts are very damning, and were the first things I looked for. "Here's a little blob in the upper left corner, is there one of the same size, shape, and location in the other graph? Yes. [repeat for all blobs] BUSTED!"

I think with this trick you finished a whole institute!

(Standing ovations)

OWE

wow, that is one hell of a job. thanks for that. now i know that when i´ll finish my thesis, i certainly would not want you around :) again, thanks.

By Belphegor (not verified) on 30 Sep 2011 #permalink

I think RRM has it right, this will end up being explained as an "Oh, that damn post doc sent me the wrong slide/there was a communication problem/labelled my file wrong" thing. Which can definitely happen, especially when the PI is flying all over giving talks and they probably have little contact with the people doing the actual experiments. But still, it looks REALLY bad.

Excellent work by the anonymous scientist. I give you extremely high praise. You have uncovered a fraud that has cost many millions in wasted research funds, would have wasted many more, and was harming patients both by diverting resources down a dead end and by inducing some to take antiretrovirals with serious adverse side effects.

What is extremely unfortunate is the social culture in science that made the anonymous scientist fear disclosing this under his/her real name. Disclosing a fraud like this should win praise of the highest order. Science should be willing to publish an analysis like this that uncovers fraud perpetrated on them. It is absolutely the place where this should be published.

The social culture where underlings fear retribution for uncovering fraud or even error is something that real scientists have to change. Unfortunately it won't because what is âimportantâ isn't the science, it is the money and the power that sciencey things brings to the non-scientists who profit from sciencey things.

Just a note to the people at WPI who were in on this scam and are now reading this (Hi there!) and who will now want to scurry around and hide all the traces. Destroying evidence that might be important in a criminal investigation is obstruction of justice. It doesn't matter what the outcome of the investigation it, simply impeding that investigation by destroying or hiding evidence is obstruction of justice.

Misreporting of results obtained via federally funded research is fraud against the government. Destroying or hiding evidence that might be important in the investigation of that fraud is obstruction of justice.

Oh, and organizations like WPI don't have a Fifth Amendment right against self-incrimination, only individuals do.

My suggestion is to lawyer-up; the shit has hit the fan. Then take a vacation and let the lawyers and investigators put all the pieces together. If you aren't there, you can't be accused of destroying evidence.

ERV,
Congratulations.

ZOMG IT's MAGIIIIIICCCCC! I want to go to HWPI (Hogwarts-WPI) for lessons from the great Judy Dumbledore!!!!!!! You could learn a lesson from her, too, ERV. With her techniques and science expertise, Judy can make even her background signals 100% reproducible!!!! ZOMG!

By Poodle Stomper (not verified) on 30 Sep 2011 #permalink

You should have included the picture in comment 8. Turn it sideways and that was, I am sure, my expression. Your magic trick is tantalizing; your sleight of hand is superlative, your prolix prestidigitation, pwnage, your l33t legerdemain, loltastic, which is why I'm sure that when I scrolled my mouse to advance the page a little is when you swapped one picture for the other to fool me. I'm not like you scientists; you can't fool me. I'm smrt, s-m-r-t, smrt.

Scientists: the 4chan of figuring shit out: not any of them is as mean or smart as all of them put together.

I think all 3 lanes look like rubber ducks.

Quack!
Quack!
Quack!

ABRAKADABRA!

great piece....congrats to you and those who don't want recognition!

Nice one ERV.

Sorry I am late. Wanted to check if this had been noticed by the 'I love Judy' brigade, but they seem more concerned that Gerwyn has left due to a falling out over some test-kit or other...

I wonder if Knicker-fits will be bamboozling them in Ireland with this part of her slide collection?

Some people don't recognize the huge difference between two things that are highly similar to each other (such as the VP62 clone of XMRV and other clones of XMRV) and IDENTITY. There are nearly an infinite number of ways for two things to be highly similar and yet different, but only ONE way for two things to be identical.

Have you reported this to the office of research integrity at the NIH?

Erv, you could write a letter to Science, telling them that you found this "mistake", and that it is relevant to the 2009 paper and would be of interest to their readers. They could probably get it into the next publication cycle in a week. I wouldn't use the F word (fraud) in the letter to Science, but everyone will know this can't be anything else.

ERV - nicely presented (although I assume they'll try to weasel out by blaming PowerPoint or Bill Gates etc.)

You'll be letting Science know though eh?

The more I think of it, the more a letter to Science is the appropriate thing to do. For all you know WPI could have two identical gels that when you put them up side-by-side look exactly identical down to the last smudge and speck for realz.

All you have noticed is this remarkable and preternatural similarity between these two different gels.

Investigating this to the level that is necessary is beyond your pay grade and would detract from the real science that you are trying to do.

It could be peer reviewed in less than a day and then Science could ask various players for their responses.

My guess is that the excuse will indeed be the "we just accidentally used the same image". So my question is: What are the odds? Seriously, because I don't know. For the excuse to be valid, the accidentally-replaced image in the more recent paper would also have to be eight lanes, with positives only in 3 and 6 with the positive control in 8. Otherwise the caption makes no sense. Is it common practice to put the control in 8 and the expected positives in 3 and 6? Is there any reason to expect WPI would do that?

I know it's relatively minor, but I think it's worth noting that there might be an added layer of inherent implausibility to that defense.

Abbie, you really need to get this submitted to Science before the close of business today, so Science can get it peer reviewed and responded to over the weekend. You might send them an email directing them to your blog now, so they know it is coming and will check their email over the weekend.

You would have to be the corresponding author because your collaborators need to stay anonymous.

Make it clear that you are not doing this as representing your university and are not using any funding to do it, so the names of your collaborators can't be gotten through a FOI.

This is something that shows the power and benefits of blogging, and even anonymous blogging (which MSM and now even ScienceBlogs considers to be anathema). Your collaborators couldn't have blown the whistle without retaliation, so they turned to you. Not because you are a super-duper scientist (which I think you are <3), not because ERV is the number 1 endogenous retrovirus blog in the Universe (which it is) but because you are a no-shit scientist and do not fear those with privilege.

It is the fear of those with privilege that is making your collaborators stay anonymous.

HTML fail!!!!

My last paragraph should have read

This is something that shows the power and benefits of blogging, and even anonymous blogging (which MSM and now even ScienceBlogs considers to be anathema). Your collaborators couldn't have blown the whistle without retaliation, so they turned to you. Not because you are a super-duper scientist (which I think you are [heart]), not because ERV is the number 1 endogenous retrovirus blog in the Universe (which it is) but because you are a no-shit scientist and do not fear those with privilege.

It is the fear of those with privilege that is making your collaborators stay anonymous.

I think the most correct way to deal with this is to first contact Mikovits with a short, rational but kinda pressuring ("I intend to...") mail. Although it will give her a possible "head start" to make up excuses/burn all the evidence, this blogpost is already "out there" and I think it is pretty likely she will take notice one of these days anyway.

Anyway, if she gives some bullshit answer (Judy is known for sending back rather erratic mails now and then), you could even use this later - and somehow I think she is more likely to give you a quick, poorly thought out and damaging answer (of course, if applicable), than she would give to an "offical request" for some sort of explanation.

And it would also be better for the lulz of course...

Errr... yeah...

Or you could pop a nice post on Dr D-J's blog and send something fuzzy to the WPI :)

Actually, I would plug for Prof Racaniello but then he's probably got enough on his plate right now and yeah probably 'fed-up' with 'XMRV/Whatever' ;)

Science should be informed though eh. It's directly relevant to a paper they published (bet they're loving that paper), and if I was the editor I would want a heads-up.

The office of research integrity isn't going to field this (yet)...

look, a figure in a powerpoint slide could have been chosen out of a bank of westerns on a hard drive accidentally. Or a case could be made for such. But a powerpoint slide and a publication do not carry the same weight, and as the science paper with this figure came out first, it's going to be assumed the figure belongs to the that study (as it almost certainly does) first. So while this is the a HUGE RED FLAG to anyone working with her, it's not even the first, one... I don't see this particular problem, unethical though it may seem, will cause a lasting issue for JM/WPI...

Jaranath asked:
"My guess is that the excuse will indeed be the "we just accidentally used the same image". So my question is: What are the odds? Seriously, because I don't know. "
Not meaning to rain on the parade but I think that is the most likely answer.
If the group in question really intended to commit fraud then it would have been trivially easy to make a new western with positive signals in the appropriate lanes - rather than use a blot from a contentious Science paper. They do have a history of being sloppy so I think that will be the most likely answer.
Good spot on the figure though, its clearly the same one.

Given that the 2009 paper came out before this power point thing, I would guess that Science can't do much about it. The most likely response will be that it was just an accidental use of the wrong slide. Unless you have a smoking gun showing otherwise, it would be hard to prove any malicious intent. I was reading a paper today in a journal that mislabeled a photo of a bladder as "intestine". These things happen. I wouldn't give Judy the benefit of the doubt, given her past behaviour but since you can't really prove the intent...

By Poodle Stomper (not verified) on 30 Sep 2011 #permalink

Well, if I am reading this right....this hocus pocus just recently occured at a conference....

so, that would make the science pic the original one...and the hocus pocus err..magicked one presented at the conference...

would it matter to the mag..if their pic is the non-magicked one?

and then ignore this if I've got the sequence wrong...

Sigmund:

Thanks, but that's kind of missing my actual question. What are the odds that the caption in the new paper would match the image from the old paper?

If this was a genuine "oops" then it'd be more like Poodle Stomper's example of a bladder labeled "intestine". As it stands, the "oops" picture happens to agree just fine with the caption; you'd never know something was wrong if you didn't recognize the picture from 2009. What I'm asking is, what are the odds that the agreement is coincidence? I hesitate to make any strong suggestion about it because for all I know there may be a good reason.

If we are made in God's image, I am a graduate student studying the molecular and biochemical evolution of HIV within patients and within populations also studying epigenetic control of ERVs.

I think it's time to deal with this Nevada style: what's the over/under on the WPI's eventual class-action settlement. You know, the one with thousands of folks who took toxic antiretrovirals on the basis of the WPI's XMRV "test"? And are we placing bets on the timing as well as the amount?

Just to play devil's advocate, I could offer up this scenario: Judy needs the image of the blot and asks whoever did it (or even a noob to the lab) to fetch it for her and email it to her. She labels the order of the samples the way she knows they are set up and inserts the photo, never bothering to double check. It could happen. It falls on me very often when my PI is putting together a paper/grant/presentation, to send her images of the results I've generated. If I make an error (and I'm anal enough that I generally avoid those) then the wrong image could end up in a slide. I'm not saying this is how it DID happen, I'm saying it's what COULD happen. Some PI's have enough confidence in their peons that for something like a Power Point presentation they don't feel the need to double check everything. It could be that this is the case. It could also be the case that Judy simply recycled this slide to support her failed hypothesis. I can't definitively say either way at this point (and honestly, I don't think anyone here can). I'm all about showing her data to be the crap that it is but let's not be so eager that we see malice where there may be none (or at least no evidence yet).

By Poodle Stomper (not verified) on 30 Sep 2011 #permalink

Jaranath, the picture is not too complicated so it may not be so unlikely that it matches the order in the Science paper. Its got a positive control on the right side and two test positives. They have probably got lots of experiment results that match that order. It is still at best an example of incompetence but a journal like Science will most likely take the word of the group if they say that the talk pic was a simple mistake.

I am sure someone under the FOIA will request the lab notes.

If and when Judy says that it was a mix up of the gels by the incredibly incompetent post-doc, she should be able to produce the "real" gel immediately. Additionally, can she name this phantom post-doc? Does WPI have an employee who is willing to take the fall for this?

I don't get it. It would be so easy to just fake a gel, why bother reusing one? Just re-run the old samples on a new gel.

By Bill Door (not verified) on 30 Sep 2011 #permalink

The way to deal with this is to send a letter and the analysis to Science and let peer review figure out if it should be published or revised or whatever. That is what peer review is for. Abbie can't do the fraud investigation that is now warranted, that will take lawyers, guns and money. That is it will involve lawyers representing WPI, JM, the WPI donors, the WPI victims, the Feds, the FBI, forensic analysis of the lab records and somebody has to pay for all of that and it isn't going to be Abbie on her grad student stipend. But with the number of hits her blog is going to get, maybe click revenue will cover it. ;)

The way JM has treated grad students at conferences in the past, Abbie owes JM no courtesy and is under no obligation to give JM a heads up. JM probably already knows about it, and is likely already purging files and trying to figure out who outed her to try and purge them.

If this is fraud, it is millions of dollars and go to jail kind of fraud. Sometimes people who do things like fraud are willing to do other illegal things. JM gave researchers who didn't replicate her results zero slack and zero benefit of the doubt.

Abbie, difficult situation wrt to reporting. At the moment we have to assume the Science figure is the correct one and the conference slide the mistake. You could write to the editor of Science about it. If the conference publishes the presentations or proceedings, you could write to the organisers. Otherwise, you need to write to Judy Mikovits about the mistake.

One possibility for all those speculating, is the slide at the conference is correctly labelled.

@TCC

Probably the same person who sent those lovely messages to ERV a while back :)

TCC-- Indeed. I will *happily* post the Real image, should they be able to produce one.

But they need to also understand that their own bizarre behavior and lack of scientific rigor throughout this fiasco (how many versions of the 'methods' in Lombardi et al are out there now? where did that VP62 come from in the CFS patient samples? why do the WPIs tests work when they know who is positive and who is negative, but they cant do better than chance in blinded studies? why do their positives turn up negative in others labs? where is their 'Normal + 5-AZA' control in that theoretical second gel?) created an environment where I, personally, will have *extreme* difficulty believing anything coming out of that lab until it is independently reproduced.

Sigmund-- The second gel is non-standard. If I were performing that experiment, I would have:
1-- Normal A
2-- Normal A+ 5-AZA
3-- Patient A
4-- Patient A + 5-AZA
5-- Patient B
6-- Patient B + 5-AZA
7-- Patient C
8-- Patient C + 5-AZA
9-- HCD-57
10- HCD-57 + SFFV

What is the point of the three 'Normals' and treating none of them with 5-AZA? 'Normal + 5-AZA' is a basic control needed to make any conclusions from that slide. Three Normals and Normals + 5-AZA for three CFS patients, or two Normals and Normals + 5-AZA for two CFS patients.

But theyve got three normals, no 5-AZA on any of em.

My PI would say 'Why did you run this gel?' if I handed it to him.

It is a stupid gel, even if it were real.

Something really needs to be done about this. I hate to see good research dollars continually wasted on this.

Please ERV do notify Science and submit a Freedom of Information Act(FOIA)request to not only the WPI but any University laboratory associated with that Science paper.

Also, on a side note, this is not the first time I have seen that slide used by Mikovits. There have been a couple of other talks I have seen her present this slide. Regardless of where the data came from she is the PI and the buck stops with her. It makes me think maybe the assays run in her lab are not as closely monitored for contamination as she claims.

@53, ERV:
"It is a stupid gel, even if it were real."

Yep. My first thought, when I read down to that second gel, was "Holy'Fuck!! That's the same gel!" As a magic trick this wasn't your best work, ERV. You kinda telegraphed the punch line.

My second thought, when I got over the gel being the same and actually read to to see what they claimed, was "But... but... but... where are the induced normals?!" It's hard to imagine a competent scientist designing the experiment on that gel - much less actually doing it and proudly showing it to anyone else.

There isn't enough here to definitely say 'fraud.' But, between this and the 'positive only' plasmid contamination of the PCR results, there sure is enough to be thinking it out loud.

And I gotta say "It is a stupid [fraud], even if it were real."

Ok, Abby,

Now we need a little video of you removing your Ray-Bans and making a pun, followed by Roger Daltrey screaming.

(I'm really tired of this meme, but in this case it would be absolutely appropriate.)

I disagree with Ramon, I think that Abbie should submit this to Science and then not involve herself with it except to field questions from the media.

If this is fraud, then it is a dead-end, zero scientific benefit wild-goose chase that provides zero-benefit to everyone involved in it.

It has already wasted too much of Abbie's time, and the time of every other scientist who has read these papers, thought about this data and spent time doing research. Any more time spent on it is time not spent on doing science, and it is doing science that advances the field.

Let people who get paid to deal with fraud deal with this. Let the PIs who make the big bucks and who do the peer review deal with this. Abbie doesn't get paid to deal with fraud, she has to deal with it as every scientist does, but she can't make a career out of this or she loses the science career that she is making for herself. My $0.02

This is a shit-hitting-fan event. The closer anyone gets to it, the more shit they are going to get hit with. Abbie doesn't want to get hit with lawsuits and depositions and FOIs. She probably will anyway, but because she hasn't done any XMRV research, has never been to WPI, has never been to any of these conferences, why is she being deposed and picked on and sued for internet stalking? Because she has a blog and uses lolspeak?

@57
I agree. There is a meeting Oct 3-5th, Frontiers in Retrovirology, where I believe Mikovits will be attending. Maybe she will have an explanation in her talk by then.

And to ERV and those that pointed out the recycled data good work!

Hello to all,

Must say I don't fully (or even nearly) understand the details - but certainly get what's being alluded to here. Disclaimer: I am a CFS ( or other such acronyms) "patient". When the science paper was written about in the press I thought it was great and implied progress in research. I felt a virus wouldn't be at all surprising and ultimately anticipated reading about the response to the study and results of necessary replications.

What I could not comprehend, as things developed, was this sort of blind militant insistence (on the part of other patients) that this suggested XMRV from one study was the be all and end all. Patients were reacting to scientific developments as though there was an international conspiracy against the WPI lady and us personally. And whoever mentioned taking bets on class action suits is spot on: more misplaced anger.

Anyway I'd really like to ask something that seems obvious to you all but perplexing to me. If there happens to be fraud here or intentional "fabricated" results - what on earth would be the reason/gain in doing that? Why? Is it not routine in research (upon a new and HUGE discovery - the potential existence of another retro virus ) that scientist the world around replicate and confirm such a thing, study it further etc. etc. Wouldn't they have fully expected this outcome? I don't get it!

Is it an issue of embarrassment regarding contamination and the potential intentional use of the wrong slide/results at some conference is coming from a place of refusal to admit such a colossal error? But then how or why would anyone insist in the face of such contradictory evidence?

Guys, just assuming for now there is fraud/deceit - what and WHY is going on? Any reply would be so appreciate!

Thanks

"My PI would say 'Why did you run this gel?' if I handed it to him.

It is a stupid gel, even if it were real."

My PI would beat me upside the head with the gel. She definitely should have 5 AZA-treated control cells in the gel otherwise the treated "infected" patients lanes are meaningless. I suppose that even if this were an honest mistake, it still reflects poorly on her that she wouldn't have considered what controls she was omitting. Stupid gel indeed =P

By Poodle Stomper (not verified) on 30 Sep 2011 #permalink

OMG. Yet not surprising at all. Two XMRV dead as a doornail posts ago, I thought I was going to miss the coverage on this blog but it just gets better and better (or worse and worse?).

That's a clever way of overlaying the images to see if they are identical. How do you do that? If the images were cropped differently, or were they?

And yes, if this was just a wrong image mistake, then she should be able to produce the correct image right away. Of course, I wouldn't trust anything she produces. It would probably be dated post-September 30 or some other other image.

I'm curious though, do you guys store the images apart from the labels? Seems that to prevent errors like this, the labels should be attached to the images.

I don't know if it would be a waste of resources but I really want to see them chased to the end, outsmarted, and go down so they can't get away with it.

By Smurfette (not verified) on 30 Sep 2011 #permalink

@59
I don't think there is a good answer to your question. What I know is that in science if you fake a result and it is not of any importance or interesting then it will likely never be found out. However, if you fake a result or make a mistake (honest or deliberate) it will be ferreted out and come to light. So there is no reason to fake a result unless you feel it is of no interest to anyone of power or importance is watching.

*Correction
However, if you fake "AN INTERESTING or GROUNDBREAKING" result...

What I would like to see is Annie Lennox doing a version of Missionary Man, modified to be pro-science, anti-quackery, pro-research as fund raising for real HIV and retrovirus research. Something to turn this drama into something productive, to recoup the resources wasted. She does have a strong interest in HIV prevention and treatment.

...My PI told me good, my PI told me strong
Be true to your data and you can't be wrong...

Kezza, for power and money and money and power. The adulation of sycophants can be a strong motivator too, for some people.

Amongst all the weird behaviors, what happened to the WPI Facebook page? I just went there to see what they might be saying about this but the page seems to be gone.

By Smurfette (not verified) on 30 Sep 2011 #permalink

Kezza,
"Guys, just assuming for now there is fraud/deceit - what and WHY is going on? Any reply would be so appreciate!"

It's anyone's guess at the moment. Other than Judy, no one can say with certainty why she is doing this. Perhaps she is deluded enough to believe her own hype (denial is a strong phenomenon). Perhaps it's for money or to save her career (which, given her recent behaviour isn't easily salvagable at this point). Bottom line, though is that no one can really say for sure what's going on in her head. Anyone that pretends to is simply fooling themselves.

By Poodle Stomper (not verified) on 30 Sep 2011 #permalink

@57 and Abbie,
I agree...I think Abbie has done a great service here...what needs to happen now is for Judy/WPI TO RESPOND....why are they stalling here all day? Perhaps they are frantically trying to run a fake gel...which by the way would take some effort..more effort than just relabelling an old gel.
ERV...I think we all know that Judy and WPI are a fraud...for me, the goal here should be to put them out of the business of exploiting patients by selling worthless expensive tests, and get them to stop treating patients with antivirals, which will not help and will cause harm.
Thanks much ERV

At the very least, you have to bring this to the attention of the NIH.

I'm going to the frontiers of retrovirology meeting and very much looking forward to the XMRV discussions there!

In the early morning hours of July 4, 2005, 23-year-old Casey slipped away forever. He was 23 years old. The only diagnosis he had - and had for years- was "CFS." his parents lived outside Madison, Wisconsin, and they had access to the best medical care. The autopsy showed he died of a heart attack, due to myocarditis - an infection of the heart muscle. The extent of old and new scarring showed he had a viral infection of the heart for years.

I know young people who became ill (during cluster outbreaks) when teenagers, who are now in their 40s. No college, no love affair or marriage,no children, no careers. Many are housebound; many of those are completely bedridden.

It is the young people I worry about the most. If you are interested ( going beyond parlor tricks), look at the new international definition for ME, in the October 2011 issue of the Journal of internal Medicine.

I suffered a blackout in my office on October 24, 1994. After that I would never be normal again. You could say I earned my living reading, and I could not read - it might have been in Cyrillic alphabet for all I understood. I went rapidly downhill. My Mai symptoms included significant CNS dysfunction (including NKH); ataxia, difficulty forming memories and the lossnofnshort-term memory, disorientation, tinnitus, sensitivity to loud noises or bright lights. I had terrible pain behind my eyes and in the back of my neck, and migraine-level headaches. My left leg is partially paralyzed, and it is difficult for me to walk. I cannot drive because I get too confused.

I could not pass a simple Romberg test. I had abnormal SPECT scans and VO2 MAX atress tests. I had the 37kDa Rnase-l defect and my natural killer cell function is 2%. and there are ther immuneroblems 5)-5 are harder to remember.

I have recurring Epsrein-Barr, then chronically activated HHV-6, Variant A;

Oh erv, the militants are dismissing this already...wanna know why??

wait for it.....
wait....

cuz you have a potty mouth!

once again, they can't attack the science so...attack the scientist!

@59 - I think this continues cuz Judy came out screaming that she had disovered the new HIV..it's killing millions..it's in the blood supply...dismissing many reputable scientists and reports..everyone involved initally has come out to say..."whoops, my bad" (which is the sign of a good scientist)..for some reason, Judy can't..

Hope the research continues for your illness..hope your health will return..

@MaryMS...well, of course Casey had an infection... Most people who have myocarditis has an infectious agent...not cfs..

I've scene many pt's with myocarditis...can't say any of them had CFS/ME..if as you say..casey's only diagnosis was CFS..then his family should be recieving mookoo bucks in a settlement from their doctors cuz of a blown diagnosis..

I don't mean to be cruel or unsympathetic..but unless people start taking a serious look at what is coming out of WPI, you are all screwed (jmho)..

@Kezza Perhaps if there is no virus, you have a $70+ million white elephant lab just sitting there. Word has it that Mikovits is going to release full sequences of new viruses to GenBank shortly.

@ Alan Dove and TCC

WPI has only very recently opened a clinic to offer treatments to patients, ARVs are not included, and what is on offer is a pretty standard mishmash of semi justifiable (some might even say quackery) antibiotics and supplements. The role of the WPI in 'promoting' ARVs has been more subtle and larglely deniable. Mikovits and Annette Whittemore have attended a number of 'patient conferences' where there's been sciency presentations but also a lot of what could be termed 'come ons' to the audiences. In a purely scientific context it might be said this was just a bit of enthusiastic hyping - but to audiences who have a collective desperation, not even for a cure but even just something which legitimises their illness, to move away from anything but the basic science, was gross irresponsibility. ARVs for M.E/CFS is a largely self prescribing activity supported by forum postings where the dangers of ARV treatment are outright denied and self treatment is supported as a personal freedom. The WPI has done nothing to alert people to the dangers that long term ARV treatment can pose, and one could conclude that the failing of the WPI is one of negligence rather one of intent. As a recipient of NIH funds (80% of WPI's money seems to have come from the US Government) perhaps it is to the NIH that concerns about the WPI should be addressed, alough as a tenant of the University of Nevada, the operation of WPI might be of interest to UoN managers.

My own take is that the the Whittemores are well meaning but way in over their heads when it comes to dealing with a scientific institution. They chose Mikovits as a lead because she made all the right noises and had a good admin record, but there's been a complete absence of independent scientific oversight. The advisory board is made up of media medics and organisational cheerleaders - the Science paper got them all hot and bothered and very pleased with themselves, without anyone asking (or even able to ask) the hard questions. It was bound to end in tears. Science as a process needs to get to grips with the XMRV fiasco but M.E/CFS patients are still sick and some acknowledgement of the patients would be good within any corrective process that now follows.

ROFL!!!! Which one of you is this Poe?

I call Poe, because no one is that stupid. You would have to be hooked up to machines to be kept alive if your brain was operating at a level required to be dumb enough to write:

(C) Lysates of activated PBMCs from healthy donors (lanes 1, 2, 4, 5, and 7) or from CFS patients (lanes 3 and 6) were analyzed by Western blots using rat mAb to SFFV Env (top panel) or goat antiserum to MLV p30 Gag (bottom panel). Lane 8, SFFV-infected HCD-57 cells. Molecular weight (MW) markers in kilodaltons are at left.

As you can see the top one that ERV uses the labels from is western blots using rat mAb to SFFV Env (top panel)

As you can see the bottom one that ERV then takes the gel from is the western blot using goat antiserum to MLV p30 Gag (bottom panel).

As you can see, the bottom panel has NOTHING TO DO with the top panel! It could TOTALLY be what Judy says it is NOW, she just 'forgot to label it' and 'forgot to talk about 5-AZA' in the Science paper!

That is an excuse I had not expected. Judy should keep it in the bag for the next time one of these 'accidents' pops up. LOL!!

Also-- According to the Science papers SOM, they exposed their westerns to film. We expose ours digitally, so I was like 'Okay, maybe they got images mixed up. We all have over 9000 digital images.', but you write on film. You write on it, put it in a lab book/book just for films, and walk to a scanner and scan it when you generate a publication or presentation.

But Im sure Judy (or that damn post doc) just accidentally scanned the wrong image that just happened to have the pattern they 'saw' with their epigenetics assays.

People truly cannot believe what that poe has posted...

really..really...no one there asks for evidence from the OP...after all the work put into this post..all they can come up with is that: ERV has meanly and vindictivly switched the labels for this blog to discredit Judy?

with advocates like him/her...no wonder the disease is so misunderstood... blind leading the blind...

That is incredibly stupid.

Because Judy was imcompetent enough to label one of two idential pictures as representing a gag and the other of two identical pictures as representing an env test, ERV doesn't know gag from env? Huh?

Great to see this idiot now backtracking and changing her argument to "these pictures are clearly different". Well, why did't you make that your whole argument in the beginning then?

Yep, the blindingly obvious identical-ness of the two blots is all in your head ERV! Geez! Didn't you know that? I mean, I've done a ton of blots before and mine all turn out identical...every time! It's to the point that I just don't run new ones. I reuse old ones and save us grant money!

By Poodle Stomper (not verified) on 01 Oct 2011 #permalink

That post by v99 was hilarious- at least it is to those of us who are molecular biologists.
I suspect that v99 isn't.
A paper in 'Science' isn't the sort of place to include an entire experiment without mentioning it!
Especially one that provides evidence in support of your disputed claim!

Yeah, v99 clearly has no science background and no clue what he/she is talking about. Sadly, one of the things the internet does is make some people think they're an expert on everything =P

By Poodle Stomper (not verified) on 01 Oct 2011 #permalink

It could just be a coincidence.

I mean, this is a HUGE universe. Existing in mind-blowingly staggering deep time. Billions and billions of years for something like this to happen in an unimaginably huge volume. It's inevitable that SOMEwhere, SOMEwhen, something at least as improbable as this would happen. Why not here, now?

(covers head, runs, dodges rotten things, fakes left, then right, dives, gets up, runs some more)

By sasqwatch (not verified) on 01 Oct 2011 #permalink

@RRM

It's actually worse than you think, what the poster v99 is claiming--and to be honest it's so weird that it took me a while to get it-is just totally false. They write (referring to the Science paper figure 2 panel c):

"The labels on the top one don't apply to the bottom one."

Yes, they do. Says so clearly in the figure label. Gag is the bottom panel, and ERV is comparing that to the Gag panel in the presentation slide.

By Richard Jefferys (not verified) on 01 Oct 2011 #permalink

Another thing that's IMO pretty stupid about this presentation, is that Mikovits still used one of the retracted slides from Silverman's lab:

http://1.bp.blogspot.com/-qxLw9lB2U6k/TnzsY5FMG4I/AAAAAAAAAEM/uQRSQfdVA…

Yeah, it was then only retracted one day, but Mikovits (co-)submitted the retraction herself as early as 8/3/2011.

Furthermore, the slide not really shows true "PCR negatives" in that figure, as this figure only reflects the single round PCR experiment by Silverman and not the nested PCR performed by WPI (with the 68/101 result). Finally, one "PCR negative" does seem actually positive (WPI-1178) on that slide, at least to my admittedly not very reliable understanding...

@Richard Jefferys,

Yes, I "understand" it now too. Can't say I am impressed with you understanding her better than me though, but still thank you anyway... ;-)

Dear god thats creepy! LOL!!

Anyone can access the original images in the Science paper and from Slide13 on Dr. DJs website.

I even used PowerPoint to make my pics, not even fancy editing software.

Literally anyone can replicate what I did, on their own, at home, if they do not believe me.

My observations are reproducible.

Unlike Judys.

*ba-dump-TINK!*

LOL!

Could somebody please post a link to the original images in the Science paper that can be accessed for free. I am really getting angry at V99 who has started a cascade of bullshit by making something up and people are reposting the bullshit everywhere with no proof. I would like to answer him directly but need to be able to look at the original copies. What a bunch of lunatics. And just where the hell is Mikovits, she should respond to this somewhere on the internet.

By anonymouse (not verified) on 01 Oct 2011 #permalink

Anon-- Follow the link mary posted, and if you register, I *think* that paper is free (they just want you to register. I dunno wtf...)

If that wont work (Im always signed in, so I dunno what people can/cant see) send me an email and I can get you the paper (though Im sure V99 will say I tainted it. heh. taint.)

missed a space so link failure... I have been following the PR website on this...IT IS nice to see some open minds, independent thinking, and attemps at understanding the science....BRAVO ..kinda refreshing..

I think for a lot of people its like being told how those David Copperfield tricks work.
They have just sat through half an hours distraction and razamatazz, then have been told his assistant has an identical twin.

How can someone be trapped in one place, then appear at another instantaneoulsy?

- because the other was just an exact copy!

Its deflating. Up to that point you were amazed, then you feel cheated - and dissonance kicks in - "no - but - but I saw...."

Oh, and B.T.W, thanks for your comments @88. It is beyond infuriating how some of these people behave, For me its just an endless facepalm, and a stomach churned hope that people who know what they are talking about are not reading this crap. Turns out they are of course - so any indication that people can see beyond these idiots is welcome.

Definitely the same.

I went back to the originals too. It don't take a scientist to see that what has been said at the beginning of this thread (and now elsewhere on the sensible forums and facebook pages) is true.

I would be interested to hear the talk that accompanied the slide - just to hear how it was presented at the conference as 'evidence' of something completely different.

Not that I expect one (I mean why change the habit of a lifetime) but it would be interesting to hear an explanation from Knicker-fits.

V99 and her XMRV Global Advocacy not to mention MECFS Forums are a disgrace. She is doing absolutely nothing to help people with my condition and neither is she helping her beloved WPI for that matter either.

Of course you won't get her admitting she was wrong either - nor Gerwyn for that matter. Straight out of the Knicker-fits mould.

LOL. I hope mikovitz has a Patronus Charm....

I've read quite a few of V99's posts in the past. He/She seem to operate (and it's hard for those of us who like accuracy and evidence to even consider) by telling blatant untruths in an authorative manner. Because a lot of it is done in pseudo-sciencey jargon, and often poorly written, it's hard to sort through it. But this, BUT THIS, is such a blindingly clear example of the modus operandi (and his/her level of smarts). IMO he/she is not (necessarily) being deceptive on purpose, they are just way out of their depth, don't understand the science very much all, and have a very flawed perception of their abilities. Plus they're blinded by faith.

Judson #97, It it my understanding that those who practice the Dark Arts are incapable of effectively using the Patronus Charm. ;)

Wow, that FB page makes it clear that not only have they no clue about science, they have no clue about photoshop usage...so sad.

By Poodle Stomper (not verified) on 01 Oct 2011 #permalink

" IMO he/she is not (necessarily) being deceptive on purpose, they are just way out of their depth, don't understand the science very much all, and have a very flawed perception of their abilities."

It's called the DunningâKruger effect =P

By Poodle Stomper (not verified) on 01 Oct 2011 #permalink

Thanks for the links to the original science paper. All I can say is that V99 is a clueless moron with no effing clue of what she is talking about. What a disgrace. I am so frikking tired of her and her pseudonyms repeating the same tired lies over and over and over. I am waiting patiently for Mikovits to explain herself.

By anonymouse (not verified) on 01 Oct 2011 #permalink

V99 and his puppetmaster Gerwyn have a lot invested in XMRV. They are not scientists but they like other people to think they are, because it validates them. Being able to make sciencey sounding noises about XMRV, no matter how wrong,and having the lemmings fawn over them makes them feel good.

They are in a bit of trouble now though, because it's blindingly obvious to anyone with eyes that the images are the same,and they're floundering because their usual trick of trying to blind those people with pseudoscience isn't working, except with a deluded few.

Luckily, as ERV pointed out, they don't represent the vast majority of CFS patients, some of whom have rather bravely come out against the nonsense. All power to those patients, and I hope a real cause/cure is found, but the likes of Mikovits and the deeply unpleasant echo chamber loudmouths are simply making the possibility of that even more remote.

By frozenwarnings (not verified) on 01 Oct 2011 #permalink

Except now V99 with the help of Gerwyn has figured it out.

"The point is even with a totally different experiment the slide presented in Ottowa should look identical to the diagram in figure C. Nothing to do with subterfuge just simple science.

The evidence that ERV doctored the slides in her blog is attached below"

Caution: not for the feint of heart
http://www.mecfsforums.com/index.php/topic,9733.15.html

'Wrong labels meeker. Also, when you combine like that, you can make an elephant and a mouse look the same. The are on top of one another and you cannot possibly compare them blurry.'

Ha Ha Ha Ha Ha! OMFG! Who the hell is she trying to kid here? Why do people fall for this? No need to answer btw.

XMRV Global Advocacy â@Matt Keevil It is nothing like dropping paint from a height. It is a controlled experiment, using the same personal, equipment and variables.

Wait, you mean they get to take the equipment home too?!

Man, the perquisites of science. *sniffle*

If anyone with a Computer Science background is bored, it might be fun to have a look at this Google search:

http://www.google.com/search?q=detect+jpeg+artifacts

For example, this paper:

"Detecting copy-paste forgery of JPEG image via block artifact grid extraction"
http://ticsp.cs.tut.fi/images/8/8f/Cr1006-lausanne.pdf

I have no idea whether that technique would show anything, since it only detects a very specific method of forgery, but it might be an interesting thing to try.

Pssst, ERV, fess up now. You have doctored at least one of the figures above!!! I just saw one of the duckies wink at the other.

Did Judy's slide do that? Huh?

Yes, indeedy.

Laurie B. ;>)

By Laurie B. (not verified) on 01 Oct 2011 #permalink

If the grammar used in this article was correct, it might have some validation. "To" and "two" have different meanings and thats your first sentence alone. A person can read a book and call themselves a nutritionist, but it takes 4 years of intense classes and a science degree to call yourself a dietitian. Therefore, if your not a virologist, you should not be commenting about things you know nothing about, didnt your mom ever teach you to keep your mouth shut if you had nothing nice to say? Chronic Fatigue Syndrome is an umbrella term used to describe a wife array of unexplained symptoms. This only goes to show how Psychiatry is struggling to keep its name as a legitimate science...

Therefore, if your not a virologist, you should not be commenting about things you know nothing about

And just what profession do you think Abbie is in?

Hint: It makes you look very, very stupid.

Most people commenting here are clearly scientists (including me). Anyone who has ever done a western blot could tell you those are the exact figures.

Self pwnage at its finest:

"If the grammar used in this article was correct, it might have some validation.[...]Therefore, if your not a virologist[...]"

Guess that means you have invalidated you're own post.

I'm a scientist and I've done Westerns, Southerns, ect... I can tell you that the odds of having two gels that exact is so astonomically small that I would call it impossible. Even with the same person doing the exact same thing with the exact same reagents, you get background noise in different areas at RANDOM. Now sure, you can easily tell what is background noice most of the time; a dot here, a spec there but the thing is, when it is random, the odds of any two gels being identical is essentially zero. Here are only a very few things in your WB that can introduce random background:
1) Your blocking reagent
2) The antibody used
3) The lot of film used
4) Any (ANY)specs on the film developer left by the previous person that used it.
5) The lot of the film
6) The age of the film
7) The amount of time exposed to the film
8) If you wrap your membrane in saran wrap (as I do for my Southern Blots) the EXACT overlaying folds of the wrap (good luck ever getting that 100% the same, ever).
9) ect...

The list goes on and on. As I said, essentially 0 chance. The ONLY possible excuse that Judy could give what that she inadvertently used the wrong scanned image in her power point. As this time, if she said this it would be possible. IF, however, she chooses to go the route of claiming that they are two different pictures but just look the same then, to me, it removes all doubt that this is intentional fraud.

By Poodle Stomper (not verified) on 01 Oct 2011 #permalink

Rick B<
"If the grammar used in this article was correct, it might have some validation. "To" and "two" have different meanings and thats your first sentence alone...Chronic Fatigue Syndrome is an umbrella term used to describe a wife array of unexplained symptoms."

Don't go all grammar Nazi if you aren't without blame yourself. And stop blaming wives. They've done nothing to you!

By Poodle Stomper (not verified) on 01 Oct 2011 #permalink

So since it's film instead of digital, that means whoever scanned it was staring at the written labels while doing so...? Wonderful.

By the way, we've seen something like this relabeling before, noticed a few months after the original WPI paper was published.

http://www.facebook.com/note.php?note_id=364365805538

"four of the 12 CFS subjects (WPI-1118, 1150, 1199 and 1125) included in the Science paper were also reported to have cancer â either lymphoma, mantle cell lymphoma or myelodysplasia."

References for above:
http://www.sciencemag.org/content/suppl/2009/10/08/1179052.DC1/Lombardi…
http://www.hhs.gov/advcomcfs/meetings/presentations/xmrv_cfs.html (Part 5, Slide 1)

The WPI said:

http://www.wpinstitute.org/research/research_biobank.html

"Were any patients with lymphoma mentioned in the XMRV study?
Blood samples from the WPI repository were chosen at random and there were no patients chosen with lymphoma or mention of lymphoma in this study. Another preliminary study was done at a later date that had nothing to do with the XMRV Science publication."

When asked about the matching ID numbers:

http://www.facebook.com/notes.php?id=154801179671 (Page is down.)

"Did any of the samples used in the original study come from patients who ultimately developed cancer?
Yes, one."

When asked again to explain the matching ID numbers:
There were no patients with cancer!!

When asked again to explain the matching ID numbers:
We will answer all questions.
Could you please tell me all of your questions again?

By Smurfette (not verified) on 01 Oct 2011 #permalink

Thanks for the links to the original Science paper. I was able to access it. I copied the slide and played with the contrast and voila, I got the same results as ERV. The Science and Ottawa slides are 100 percent identical and V99 is full of shit and should be embarassed by her latest toolish/foolish statements.

Anyhoo. Lets say that somebody (Judy or one of her minions) selected the "wrong" slide for the Ottawa conference. One has to ask oneself, when was the slide labeled and by whom. Wouldn't it have been labeled as soon as it was produced. How did it come to be labeled differently. Are blank slides just lying around to be labeled randomly to match the study or conference du jour?

I can't wait for an explanation of this. BTW, it seems the WPI facebook page has disappeared -- some are saying it's down for repairs or is it?

By anonymouse (not verified) on 01 Oct 2011 #permalink

Oh dear - a message that I was still writing, disappeared and I assumed it was gone, instead it showed up half-edited here. My apologies.

So first let me make my point: whatever you think of Dr. Mikovits, her purpose WAS honorable. I was there. She was trying to figure out how one million people could have an invisible disease - and why about 250,000 of them are bedridden and/or housebound ... For decades. The particular case was that of a 32-year-old woman who has been sick since she was 12. I know many young people with this disease - I have friends who became sick in their teens, and are now in their forties. No college, no career, no spouse, no children.

Dr. Coffin was so pleased with himself because no one had any way of knowing, at the time of this study, of the particular type of contamination he has found. So if we start at the beginning, her motives were honorable.

Now, I happened to be one of the patients who was positive for XMRV in that study, by both serum and antibody. But ... I am a scholar myself, in a different field, and I withheld judgment as to how this would eventually turn out. In part, however, I was able to do so because I have been in other studies that documented immune defects and viruses, that should not have been there, and I have had testing (SPECT, VO2 MAX, even a simple Romberg test) that show there's quite a bit seriously wrong with me. And because of that, I have had treatment that alleviates many of the worst symptoms. I am lucky.

But that danged name, chronic fatigue syndrome - created in 1988 - has kept most people from getting the testing I have had - that, and the refusal of CDC to take it seriously. Which benefits .... Whom? Insurance companies and those who think an "entitlement" is a shirker - not a clause in a contract by which you were promised care if proven unable to work, and I have been proven unable to work a lot. So there has been little research to hit the public - none of mine has - and XMRV did. A possible diagnosis meant a possible cure. I don't know if you can understand what that meant to these people. To have their disease taken seriously. For there to be the possibility of a cure.

I also want you to understand how sad this is. In my case, I loved what I did. I loved everything about scholarship and the university life. I loved taking my kids skiing in the winter and hiking in the summer. I loved running on a beach early in the morning. I suffered a blackout in my office in 1994, and when I came to, all of that was gone.

Now, I am lucky - lucky that my husband has been able to support me, that I do well on a Phase III immune modulator, and that my own disability check can pay for the medicine. Most of my friends cannot afford testing or medicine. Mine costs about $30,000 in cash - almost twice as much as most of my friends have to live on in a year, and that inckudes people who were once nurses, doctors, teachers, lawyers. But the worst is the teenagers.

They want so badly to be mainstream. And this study promised that. I worried at the time that their hopes were too high and the fall would be too hard - and it has been.

But while I apologize for the jerks who wrote nastygrams [I've received a few myself] I can't say it has helped at all to be laughed at. What percentage of the one million victims of this disease wrote to you? Most can't even do that. Many of us thought it would be unseemly to write to you at all.

So when you get tired of poking cracks at someone who was honestly trying to help seriously Ill patients (Dr. Mikovits), would some of you please try to find an answer for why a clear subset of patients with this disease have opportunistic and reactivated viruses, immune defects, cardiac abnormalities, etc. Is it the viruses themselves? I have so many questions - for example, does ciHHV-6 exist? (chromosomally integrated HHV-6 , which is supposed to be inherited not like a retrovirus, but since it attaches itself to a chromosome, in a Mendalian manner). Is there something about EBV that makes us vulnerable, or is it our vulnerability that makes us susceptible to EBV? What does it mean to have beta herpesviruses active in my spinal fluid? You're students - got any curiosity about all this?

And then there's the role of Coxsackie B. Did you know that when they developed a vaccine for Polio 1, 2, and 3, they simply renamed the remaining polioviruses "enteroviruses," and then announced they had conquered polio? Coxsackie is an enterovirus, too - but all funding for enteroviruses died out at the end of the 1960s. So there's no approved drug for Coxsackie B! Yet that's the virus that researchers thought was behind M.E. (Myalgic Encephalomyelitis, which I really DO have, which has been diagnosed continually in the British Commonweakth since the mid-1950s). and it has shown up in a number of us (see the work of J.Chia), and me, too. So who needs a gamma retrovirus? I have quite enough that is ignored.

About the myocarditis - I have another young friend with myocarditis and a diagnosis of CFS. He had to go to Germany to get the diagnosis because no one in the US would do the biopsy on a young thirty-something. He has active Parvo and HHv-6A in his cardiac muscle, and also has CMV in his blood, and viruses (I can't remember which) in his bone marrow. Butnhe had a diagnosis of CFS.

Another young man diagnosed with cardiac abnormalities was given a special wheelchair. But when he tried to take it to school (he was 16) the school authorities and social welfare decided his mother was making him sick, and put him in foster care - made him live in the basement so he would have to use the stairs to eat, because they thought he wasn't really sick - she had just made him so. Why would they do that? Because he had an earlier diagnosis of CFS. I was involved in getting him sprung, finding specialists to testify, but it took ten months. At 16. (And no, they didn't make him better, but thankfully he didn't croak.)

Do you WANT to know about the PEOPLE the research is about, or is it easier for you to think of it as things in a test tube? I'd like to think that some of you have chosen this path so you can help people - although it's a really cool field, and if I were young, and not sick, I might have chosen it.

If I could edit I would be more concise, but right now it is very difficult for me to read - I can spill words out on a page, but reading is difficult.

So ... While you are rejoicing in what appears to be a very sad story, perhaps some of you might think about these other viruses - EBV as a trigger, the beta herpesviruses, and Coxsackie B - and why the CDC says explicitly we shouldn't be tested for them (that's why I had to pay) - and why they are active. About the 37kDa Rnase-L and natural killer cell dysfunction.

Oh. You're just interested in it if it's a retrovirus. Yes, we know. We're used to it. Most of us. But for some, it's a heartbreaking revelation and they say things they shouldn't. But sometimes graduate students say things they probably shouldn't, too.

MaryMS, sorry for your health problems, but what in the world do you want? Science not to move on? No one allowed to criticize St. Judy?

I fail to see just what you point is by going on and on ad nauseum about your illness on a science forum.

There certainly is a time and place to do that, not saying you shouldn't, but it does not add anything to this discussion. There are support boards where your post would be more approproiate as well as beter serving your needs.

By Laurie B. (not verified) on 01 Oct 2011 #permalink

By the way, we've seen something like this relabeling before, noticed a few months after the original WPI paper was published.
http://www.facebook.com/note.php?note_id=364365805538

That Facebook page is an eye-opener, with Andrea Whittemore popping up immediately in the comments to call Dr Vernon a traitor and a "real piece of work" for failing to back everything Mikovits said with 100% support.

By herr doktor bimler (not verified) on 01 Oct 2011 #permalink

MaryMS == this blog is about what Judy presented in the Science paper and at the Ottawa conference. She presented two identical slides that indicated two different results. No more, no less. Don't make it more than that.

By anonymouse (not verified) on 01 Oct 2011 #permalink

daedalus2u @118

#111 is a Poe.

Or a polygamist since they have a "wife array".

By Militant Agnostic (not verified) on 01 Oct 2011 #permalink

Dear non-militant CFS patients,
V99 and Gerwyn are saying to you, "Who are you going to believe, me or your own eyes?"
You can compare the gels yourselves by looking at the original figure and slide 13 that is posted on Jamie Deckoff-Jones' blog.
TCC

Yeah, TCC, we 'non militants' (F.F.S) are quite capable of seeing whats what, and have been able to throughout this whole shambles. - thanks for your help though...

@David
So what's your conclusion?And why the hostile tone?

@David
What's F.F.S.? Assuming you are open minded, I assume you came to a conclusion similar to "Holy Guacamole...these gels are exactly the same and someone labeled them COMPLETELY differently, and they were presented as different experiments. how could this happen? I hope Dr. mikovits has a good explanation for how this could have happened.".

@120 MaryMS: you say *quote*

Do you WANT to know about the PEOPLE the research is about, or is it easier for you to think of it as things in a test tube? end *quote*

I'm going to answer this for myself and I hope that MaryMS does not feel that I represent any other scientist or lay person opinion.

Mary..of course I realize that every cell I examine or test represents a person with a dreadful disease..but bringing emotions into science is a gigantic FAIL for me.. If I end up crying into every test tube..I'm good to no one..I'm not good to science..

When Judy said in an interview that 15 suicidal patients call her.. well, If Judy did not take the appropriate actions after getting those phone calls..she's screwed up again.. Legally (in most states) suicide is a reportable offense. A pt. (or anyone) calls me up, suicidal, I'm calling in the authorities who specialize in that behavior and I cannot let that interfere with my test results...

Again, this is just me..doesn't mean I don't go home and feel despair for suffering people..just can't bring that into the lab..

@Smurfette...great find...!

That Facebook poster isn't just claiming the blots of two separate runs of the same experiment ought to look very similar; they are literally claiming they should look completely, 100% identical, RANDOM SMUDGES AND ARTIFACTS INCLUDED. They're also claiming to have extensive experience with running gels.

So...yeah. Now my head hurts.

@jaranath, and that is on a Facebook photo she titled, "ERV's image is not the same." LOL!

Usually we just walk by crazy homeless people mumbling on the street or the one crazy inevitably found preaching in the middle of university plazas....

By Smurfette (not verified) on 01 Oct 2011 #permalink

Well, I posted it here somewhere else already, I also saw the blot of the co-IP of XMRV out of PCa patients plasma on the poster of JM concerning XMRV in PCa & CFS in Prague with different patients numbers on it than I saw it now in the third slide of that presentation mentioned here.

But, what will happen? There will be statement that somebody used accidentally the wrong image in that slide or just but in the wrong patient numbers, but of course it was a true and valid experiment in the 2009 Science paper.

For people who are already suspicious of JM it is just another piece of evidence, for the (small) rest of the scientific community or WPI supporters it is just an excusable mistake :-/

@117 Nice find. I hadn't read of that before. Will take a look at the links.

@120 Mary MS. I too am a patient afforded this accursed condition. Had you commented on what exactly Dr Mikovits had said when using that slide it would be relevant to this thread.

Heck you might even have been able to explain why she chose to use the slide in the first place. What point was she trying to make? Your explanation as someone who was in the audience could have made all the difference here.

But, unfortunately you have chosen not to do that. I too could spend just as long describing how bad this condition affects me and what a life-altering experience it has been - hell all those other patients who read ERV could do the same. But we choose not to as it is not relevant.

I know from reading 'CFS' or 'ME' forums that are supposed to be supportive that ERV is too often held up as being the devil incarnate - but take a while to actually read what she is saying before proclaiming her guilty of some huge crime.

And as for your other comments, I personally believe that one of Dr Mikovits biggest failings is that she is too close to patients and uses emotive language all too often. It's like she is almost happy to scare people into believing one of her pet theories before producing any damn research paper that holds up to peer review and actually makes it out of her drawer and into a journal.

She seems most comfortable at conferences and with patients where she can be the 'scientist who knows AND cares' and not when it matters most. If her latest answer to the BWG findings and the partial retraction, is that you are not 'XMRV' positive but 'HGRV' positive - then for heaven's sake let's see some darn evidence BEFORE she tells patients.

The response I want is:
"A random blogger has pointed out that we made a mistake in a recent presentation. To our great embarrassment, we have actually been using that slide for some time. We apologize to the audience members of those conferences, we greatly appreciate this blogger pointing our error out as to prevent future confusion, and we greatly regret that we have played a role in cultivating an atmosphere where fraud is the first conclusion someone makes after spotting an error. We will do better in the future."

What I expect to be the response:
*crickets*

OR:
"The blogger ERV is a fraud/liar/taking bribes from insurance companies."

I mean the UK group could not find XMRV?
Accused of fraud/lying/conspiracy and harassed by WPI/Mikovits.

Netherlands group couldnt find XMRV AND noticed inconsistencies in Judys presentations AND accurately predicted the results of the BWG?
Accused of fraud/lying/conspiracy and harassed by WPI/Mikovits.

CFS advocates notice inconsistencies in Judys presentations:
"YOURE A TRAITOR" from the Oh-so-fatigued Princess-who-cannot-be-named.

And how many 'versions' of the Methods and patient cohorts do we have, at this point? The actual Science paper, the 'response' in Science, the weirdly republished-in-another-journal methods, the several (dozens??) of 'methods' Judy has presented at conferences...

These people have been forthcoming and honest about their methods and wtf is going on at the WPI a grand total of, what, ZERO times?

And *really*?? *NO* response yet? Even 'Its obvious we have made an error, and will be investigating it on Monday'? Cause it is *OBVIOUS*.

My hope we are going to get a real, honest, human response out of this is dwindling by the minute.

The response I want is:
"A random blogger has pointed out that we made a mistake in a recent presentation..."

Part of the mistake, though, is that the caption for Presentation Slide 13 would not arise naturally. As you pointed out at #53, it lacks the control condition (normal + 5-AZA) that is needed to prove anything.

The only way that Slide 13 makes sense is if the illustration came first and the caption was reverse-engineered to fit.

By herr doktor bimler (not verified) on 02 Oct 2011 #permalink

It would be refreshing if WPI came out with an explanation...especially since those speaking for them (Gerwyn and the wanna be guy fawkes person) have really made them look like idiots)..

I don't think that there is any chance WPI will say anything..if they did then they'd have to splain all of their past "errors"

Camaro....I did read a post from you a few days past about another discrepancy with her slides....BRAVO! that needs an explaination also..or an announcement that her lab tech is in serious trouble!

Abbie,

Have you tried recreating the MW standards? If the ladder and lane measurements are the same, that basically proves the images are identical as far as I'm concerned.

Have you tried recreating the MW standards?

Look at the "overlay" image- I don't think any recreating is necessary, since the sizes given by the authors match when the blobs match.

ATTENTION JUDY MIKOVITS AND WHITTEMORE PETERSON INSTITUTE:

Game over.

DONT FUCK WITH SCIENTISTS.

DONT FUCK WITH SCIENTISTS.

ATTENTION ERV READERS:

Please stay tuned. :-)

Don't do anything to bold, legally shady or morally ambigious, it will all come out anyway. This cardhouse is going down fast.

I don't know very much about how gels are scanned, stored and then photoshopped for final inclusion in a paper. The scanned image always has all the labels and stuff that everyone always puts on their gels? Right? And the photoshopping usually just includes cropping and maybe some contrast adjustment? And the captions are put on the slide just to replicate in a pretty font what the gel already says, right?

Wouldn't it be unusual to take a gel that already had all of its labeling cropped off and use that for a presentation? Wouldn't you pretty much always start with the original? Unless you were doing a review and wanted the exact same slide? And then it would be exactly the same, the same font, the same contrast, the same aspect ratio, the same labeling, the same cropping, the same everything? Right?

How many gels does a lab generate and how many MB does a scanned image take? If one was a hot shot PI and had a top-of-the line laptop, wouldn't one carry copies of the gels you wanted with you? If each gel is 1 MB, then 10,000 gels is only 10 GB. 100 gels a day for 3 years is only ~100k gels, at 1 MB that is only 100 GB. My cheap-shit laptop can hold that much.

If you were using the gel as a slide to discuss specific results, how is it possible to be so confused as to use a different slide? Presumably there is a gel that does have the exact same labels as the image in the slide. A gel that uses wacky controls and doesn't make much sense. Presumably WPI will be able to produce the full image of that gel that shows the actual wacky labels and that also shows how nearly identical it is to the Science image such that they could be so easily confused.

More teasers??? Damn! Some of us are shockingly impatient you know. Out with it!

PS. :)

Damn..it's not like I'm not already refreshing this pg 30x's/day.....

In Vitro @74 "Science as a process needs to get to grips with the XMRV fiasco but M.E/CFS patients are still sick and some acknowledgement of the patients would be good within any corrective process that now follows. "

Nothing less than an apology.

To me personally - hehe.

No, there are tricks, punked's - and cruel jokes at others expense.

There have been two years in which to tone down the taunting - 'I have the cure - I have the cure' - just a little bit.

The scanned image always has all the labels and stuff that everyone always puts on their gels? Right?

Not necessarily, it might just be named and dated so it can be connected to the sample information in the lab book. Even so, it would be hard to accidentally use a much older image from a different experiment.

The scanned image always has all the labels and stuff that everyone always puts on their gels? Right?

:)

Right.

About the patients, it would be cool to get some kind of guest post here by an accomplished CFS worker (not-retrovirologist) wo can give us a general, realistic, not ideological overview of the disease and acknowledge the patients problems and suffering.

Yeah that might be interesting and enlightening but I think that it is important to remember that this is not a CFS blog or a patient advocacy blog. So many problems seem to occur when sufferers expect it to be one.

ERV,

Good spotting! It's strange, but when I read the Science paper I remember thinking "Why did they waste so many lanes with 'normals'?" Now - thanks to you - I know why.

I believe it was Feinman who said (something like), "Science isn't usually a moment of 'Eureka!', it's most often 'Gee, that's odd.'". You were the one who went from "Gee, that's odd." to making the discovery - true science in action.

Congratulations!

BTW, I do Western blots all the time and I can't get my well-characterised standards to look the same blot-to-blot, let alone identical. And that goes triple for when I was still using film - exposure time, developing temperature, film age, film batch, etc. made for a lot of variation. Now, of course, we use a phosphorescent screen and digital phosphoimager...and I still can't get the controls to look as identical as Mikovits did.

Prometheus

I think it is unreasonable for ERV to post about things that are outside of Abbie's expertise. It would be like me trying to post or make a comment about something not related to nitric oxide ;).

I am glad that this is on its way to a forum that is considered âpublicâ.

I hope you have kept screen shots and good notes so you can write a review paper about all of this when the shit storm finally clears.

I think the most important lesson that science needs to learn from this is that privilege has no place in science, and that this is an excellent example of how the privilege that funding agencies, PIs and senior scientists hold over postdocs and grad students is harming science.

"....it would be cool to get some kind of guest post here by an accomplished CFS worker (not-retrovirologist) wo can give us a general, realistic, not ideological overview of the disease and acknowledge the patients problems and suffering."

Err, I'm sure I'm not the only CFS patient who reads this blog who would be mortified to see that happening here.

There are already too many whiny sympathetic echo-chambers patient advocacy and support forums out there. This just isn't the place for that, IMO.

for the sake of science could people please use objective language rather than swear words.

it is interesting that the latest paper shows an over active immune system. therefore leading the way for further research into this devastating illness. top scientists are now interested in M.E. and so regardless of any mistakes the WPI have done a hugh amount to raise awareness. Bringing top scientists to the field.

How wonderful for M.E. patients to now have such wonderful scientists such as lipkin alter levy so interested to work on M.E. research.

i know that nancey kilmas was quoted in the new york times as saying that she treated both aids/hiv patients and M.E. patients, and she would rather have hiv than M.E.

how many years did i take for the scientists who found the real reason and effective and simple treatment for stomach ulcers to become accepted. for many years these patients were told to change life style and blamed for their illness.

the real magic trick is the pace trial run by the shrinks who have left many bed bound and even lead to fatal outcomes by their treatments. ultimate responsibility has been shown by company directors for corporate directives. ergo should the real court case be against the shrinks who knowingly advocate and make magic tricks from the figures of such trials as pace?

i would be interested to see your comments on how these shrinks are able to ignore the thousands of papers showing immune endocrine cns abnormalities.

WPI may or may not prove the mlv family are involved however they never said that they were the cause merely that they may be. However the major scientists including the co founder of the first human retro virus working now in the field of M.E. has to be seen as a great achievement.

laura, if you're going to dump long-winded copypasta could you at least make it relevant?

But I don't know anything about CFS. It would be good to know what this even is, from a scientists perspective. Right now, I only know random anecdotes patients posted here. I'm sure many people reading this are the same.

@154..hey Matt...not only is the copy/pasta not relevant...but possibly wrong...imagine that...

she thinks Jay Levy is just NOW involved with finding a cause for CFS/M...since WPI...hmm, I would be a bit hurt if I were Levy...

Many..Many very good scientists have been trying in vain to find the cause for many years....and if I were one of them..I'd probably be insulted by Laura..who thinks only the good one's have recently joined the fight...

..WPI has done you a great diservice laura..

opti @ 152 Seconded, absolutely.

mo @ 155 It is a complex subject in itself, though a simple enough illness in its presentation.
Its easy enough to google for the basics like aything else.

At the minute it has no known cure, and although there is a constellation of fairly reliable 'bio-narkers' their interpretation is difficult.

Science abhorrs a vacumm, hence the the bullshit that is sucked in around this issue.

I come here for virology, not more CFS discussions.
All I want to know is, is a virus a potential cause?

Cant be one specific one since 70% of cases of CFS cases follow an infection from a few common different things like EBV. So, some kind of secondary agent that lays low might be involved, like shingles or herpes, or an ... - until the immune system is compromised.

Of course a virus may not be involved at all as the actual cause, and people may be suffering lingering immune system damage. Its all simple stuff really in terms of the right questions - why do some people get up quickly after a heavey blow to the immune system, others dont?

Some will say its just being lazy, others, well everything under the medical sun.

Being labeled lazy is obviously, after a cursory perusaul of the literature, a useless ideology.

That leaves, pathogen, or immune system damage.

Thats all.

I appreciate the comments requesting additional information on ME/CFS then this recent article by Levy/Peterson in the LA Times is a good start. 1-4 million people affected in the US at a cost of $29 billion dollars 17 million worldwide. For a snapshot here are some articles to understand this debilitating illness.

http://www.latimes.com/news/opinion/commentary/la-oe-levy-chronic-fatig…

or a personal account Laura Hillenbrand New York Times Bestselling Author for the book Seabisquit made into a movie with Jeff Bridges and PBS special by the same name and her new book Unbroken.

http://www.cfids-cab.org/MESA/Hillenbrand.html

or the story of Michele Akers 1996 Olympic Gold Medalist winner in Women's soccer and considered the best woman soccer player in the world by Sports Illustrated who came down with this illness.

http://sportsillustrated.cnn.com/inside_game/magazine/soccer/news/1999/…

@mo

Why? This is a science forum. Look for some medical forums. If I get a chance I will try to find some credible sources for you. You might want to start with the NIH/CDC sites.

Now back on topic.

By Laurie B. (not verified) on 02 Oct 2011 #permalink

Laura, the PACE Trial is totally irrelevant here, but just for your information, it was a well conducted sound piece of research that needed to be done. You've obviously been listening to the echo chambers of the so called patient advocates. These people know NOTHING about science or research. They are conning you. Listen to the scientists, not the people pretending to be scientists and you will learn a lot more.

Many scientists have been working hard for years to find a cause for CFS. Just because they do real science, are professional, and don't whore themselves out to any group that will have them, and aren't interested in personal glory does not mean they weren't there doing what scientists do.

This whole affair has been detrimental to the cause of finding a solution to CFS because it has shown other scientists that should you find anything that goes against the deluded people on certain forums you will be bombarded with vile abuse and false accusations (as ERV has been in the past, along with many others).

For anyone who wants to know about CFS there are plenty of places to find out, but this isn't the place, this is about science. Just stay away from patient forums where people are pretending to be scientists.

By frozenwarnings (not verified) on 02 Oct 2011 #permalink

My apologies if this is a double posting as suddenly my computer froze as I hit post and didn't know if this went through.

For those requesting this information.

I appreciate those who want to know more about this illness which affects between 1-4 million people in the US alone at a cost of $29 billion dollars and 17 million worldwide. For those who want a back ground information.

Peterson/Levy article in the recent LA Times
http://www.latimes.com/news/opinion/commentary/la-oe-levy-chronic-fatig…

New York Times Bestselling author Laura Hillenbrand for the book Seabisquit made into a movie starring Jeff Bridges and PBS Special and for another NYT Bestseller Unbroken
http://www.cfids-cab.org/MESA/Hillenbrand.html

Account of Michele Akers 1996 Olympic Gold Medal Winner in women's soccer and considered to be the best women soccer player in the world prior to her illness.
http://sportsillustrated.cnn.com/inside_game/magazine/soccer/news/1999/…

It's still science if this hasn't anything to do with virology. medical science is also science. Don't be so field restricted, people. Not everything interesting has to do with any viruses, and looking to fields outside of your own one can let you see things that have impact on your work. This attitude led to the bullshit Mikovits produced: "this is a serious and mysterious disease, therefore, retrovirus"

Mo, check out the name of this blog. It's about virology. To assume that no-one has looked at any other aspect of disease is massively patronising, arrogant and wrong. I'm a medical researcher, I go to different places for different information. I don't go to an immunology site for example, to look at quality of life data.

By frozenwarnings (not verified) on 02 Oct 2011 #permalink

A little O.T.T frozenwarnings.

Forums can be useful places, I dont avoid them because of cranks. You can pick up useful information, and there are some smart people around. I am a scientist, and I know others are since they also never got 'I Love Judy' tattoed on their butt.
Some people on Star Wars forums think it was a documentary, but I'll be OK dropping in to check out the blu-ray details.

You may as well say, stay away from the interent because of all the people pretending to be...well you name it.

Mo, if you want to learn about CFS, you have to go to the CFS scientific literature, read the literature until you understand it well enough to sort out what is crap from what is gold.

Usually the data is gold, even when the analysis is crap. That is for honest scientists who have too much intellectual integrity to not be honest about their data. The reason the analysis is sometimes crap is because journals and funding agencies want âhypothesis drivenâ research. That means you have to have a âhypothesisâ that can be âfalsifiedâ, even when your real hypothesis is âI don't know what the #$%@& is going on, so I am going to measure some stuff!â

There is no substitute for actually understanding the data and what that data means about the (as yet unknown) physiology of CFS. If you don't know and understand the data, then you can't have a valid opinion about it. It takes about 10,000 hours to become expert in a field. If you work on something 8 hours a day, 5 days a week, for 5 years you can become an expert too. If someone hasn't put in that kind of time then they are not an expert.

Real experts, real scientists don't try to do things beyond their expertise. That is why you probably won't see a blog post by ERV on CFS. CFS is not her expertise and she knows it, and she isn't going to spend the 10,000 hours it takes to become one. Either find another expert or (much better) become one yourself.

Yes. I was addressing David's and Laurie B.'s statements of "All I want to know is, is a virus a potential cause?" and "Why? This is a science forum. Look for some medical forums." and should have made that clear.
I didn't want to imply noone looked into CFS and also not that you two, David and Laurie, did not do that. I want to appologize if it came off like that. I was specifically criticizing the attitude of statements like those.

It seems to be hard to look into the biology of CFS. The reviews I saw on this topic on pubmed show mostly that not much is known. yeah~

That's why I said "guest post". :P

According to V99 "ERV may be quitting virology after this latest blog sham"
She can forecast people's futures now?
Really that forum is full of surprises!
:D

PS Looking forward to your next installment...

David, I didn't suggest that everyone should avoid all patient forums, only the ones where people are pretending to be scientists, as happens on some of the CFS forums (and FB pages). These are echo chambers where people are being actively misled.

Having said that I've seen a few patient forums on and there is often some very dodgy advice being doled out, especially about alternative "medicine".

By frozenwarnings (not verified) on 02 Oct 2011 #permalink

re WPI: It's looked unlikely that their work was going to hold up for some time, but this could indicate something weirder is going on there than just contamination. It doesn't make any sense for the Whittemores to do anything like this. Maybe Mikovits got so caught up in her own theory, she though that she had to do something to keep people doing more research on it? Maybe she feels like there's no way out at this point?

re PACE: I was just reading a new CFS paper that was arguing that more funding should be given to CBT/GET, and cited PACE: "Evidence from a recent evidence trial of cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment."

http://www.biomedcentral.com/content/pdf/1472-6963-11-217.pdf

Lots of patients are claiming that there's a group of researcher who are just lying about the efficacy of treatments for CFS. Another group of researchers also seem to agree that the benefits of CBT/GET are being massively exaggerated by some psychologists.

To me, the actual data from PACE seems pretty unimpressive, but I'd like to take the time to have a more thorough look. If it's true that mere management strategies, or caring therapies, are being promoted as cures, then that is something to be angry about.

gf1 - "If it's true that mere management strategies, or caring therapies, are being promoted as cures, then that is something to be angry about."

That in a nutshell is the problem.

frozen @169 - I dont know what to think about that, other than I am sure every self help forum for every disease has its alternative 'medicine' advocates. I mean people regularly swear a trip to the Holy stone of Clanricket, tea,chocolate, or shear force of will against negative forces cure them of anything from a bout of flu to cancer.

I just watch out for people actually peddaling bumper 'buy three get a ton' offers for Immuno-booster factor Z.

Laura, the PACE Trial is totally irrelevant here, but just for your information, it was a well conducted sound piece of research that needed to be done. You've obviously been listening to the echo chambers of the so called patient advocates. These people know NOTHING about science or research. They are conning you. Listen to the scientists, not the people pretending to be scientists and you will learn a lot more.

The PACE trial was poor piece of research. Not that it matters so much to me, because nobody seems to pay attention to Wessely and his junk science in the United States.

However, despite Abbie's potty mouth, it's clear she uncovered something very serious. I don't know whether to call it fraud or not, but it's very suspicious. It's sad to me that the extremely vocal and unreasonable minority on a specific CFS forum represents the community in the minds of many.

By The AnaIyst (not verified) on 02 Oct 2011 #permalink

Oh dear, invasion of the Wessely haters. I've never read so much utter garbage on the internet as I've read about PACE.

However, I'm not going to derail ERV's blog with pointing out the total wrongness here.

So ...looking forward to the next update ERV.

By frozenwarnings (not verified) on 02 Oct 2011 #permalink

Gonna be a while, maybe. Too big for me. I dont want to break it here-- Like daedalus2u has mentioned, this particular information is way over my head as a random blogger/grad student. Letting the grown-ups figure this shit out.

But... its *done*.

Aww, at least let us in on the main point (other than "It's done")?

By Poodle Stomper (not verified) on 02 Oct 2011 #permalink

well, since you can't go any further....thank you and the annonymous co-contributors for exposing this much..

can't wait till it all comes out!

Thanks ERV.
By "a while" - do you mean a few days, or more month-y kind of a thing. Or a "god-only-knows" kind of a timeframe?
Just wondering whether I should get another F5 key in or not.
:)

Abbie, I hope you have a secure, well-defended, and undisclosed location you can hide in while the shitstorm rages, if you need one.

Be sure to keep all the hate emails so you can publish them as supplemental information in the review article you are going to write after all the shitstorm has settled.

Those hate emails are bullying. Bullying that is the same as booing a gay soldier, cheering the execution of innocent people, or cheering for the death of the uninsured.

Bullying is people with privilege using that privilege to hurt people without privilege.

http://www.zephoria.org/thoughts/archives/2011/09/23/the-unintended-con…

I appreciate that bullies don't care if they hurt people without privilege, in fact that is their goal and motivation. What bullies don't always appreciate is that their victims can sometimes figure out that the bullies are trying to hurt them and would hurt and exploit them in a heartbeat if the bully got more privilege out of it.

This is pure speculation on my part, I have had no communication with anyone, except what has been posted on this blog.

If Abbie did send this to Science, then she can't talk about it because it is embargoed. However, there is a Frontiers of Retrovirology meeting, tomorrow.

http://www.frontiers-of-retrovirology.com/

My guess is that that people at the meeting have already arrived, have already talked about this, and have already gone to sleep because Amsterdam is 6 hours ahead of Boston (where I am).

Discussions at scientific meetings are not embargoed, and even embargoed results and embargoed papers can be discussed at scientific meetings because that is the whole point of scientific meetings, for scientists to discuss data and results, especially the most current and hot-shit-cutting-edge results.

My guess is that mainstream media has gotten a hint that something is happening, and that some of them (probably at least those located in Europe) will have a presence at the Frontiers of Retrovirology meeting tomorrow. It is unfortunate that bad news about science (and fraud is always bad for everyone) has more interest to mainstream media than does real science.

I am not sure what the sciencey-type journal protocol is, but I suspect that if a sciencey-type journal gets material via the âembargoedâ feed, they can't report on it until the embargo date, even if they find a whole F-load of material they want to report. If Abbie did send this to Science, then they probably turned it around ASAP to get the embargoed version out before the Frontiers in Retrovirology meeting so it gets embargoed by the other journals until the embargo release date.

But anyway, the XMRV sessions are not until Tuesday, which gives MSM plenty of time to get there.

My hope is that the media attention will bring ERV to the attention of Annie Lennox who will write a hit song about it and bring great fame and kudos to Abbie (and funding too).

daedalus2u-- Nononononono. Like I said, this is way over my head. I know because that Figure 2c was the key to Pandoras box.

Waiting (not) patiently!

By Smurfette (not verified) on 02 Oct 2011 #permalink

"Look at the "overlay" image- I don't think any recreating is necessary, since the sizes given by the authors match when the blobs match."

The westerns that I run on a daily basis, which are not faked, could potentially be overlaid on top of one another because they look similar. Basically, I use different protease inhibitors to delay the dissapearance of a product I'm interested in. I look at the same proteins with the same antibodies-ergo similar blots. A lot of my blobs are different shapes, but some do look very similar.

HOWEVER, my standards run at different distances down the gel every time. Perhaps the 150 mark goes 40 mm this time...next time it goes 45. Sometimes, it goes 42. If the markers on each gel don't match up, it doesn't matter if the images are identical because the markers won't match. It's easy to imagine labels which have been slapped there by people being identical...but the MW markers which get transferred along with the proteins in the gel generally run at slightly different places each time and thus serve as a *much* better fingerprint.

I don't know if Abbie has access to the originals, that's what would clinch it for me.

daedalus2u-- Nononononono

Surely NO should be in capitals.

By herr doktor bimler (not verified) on 02 Oct 2011 #permalink

herr doktor bimler @ 122:

I didn't know who the heck Andrea Whittemore was at the time, and while Google searching to try and figure it out, I found a LinkedIn profile that appears to belong to her, saying that she teaches English As A Second Language.

The irony of her poor grammar and spelling in those comments was not lost upon me.

The thing is, it's not way over your head. The publication record should be up to review by literally anyone. Otherwise, what the hell is it there for? My lab, in a manuscript review, found literally the exact same thing; a reused Western from a previous publication (not quite as bad). You should be able to raise this point as someone who works in Subway or McDonald's. Although, as a grad student, I understand why you can't. ;(

gf1 @ 170- That's it in a nutshell. The 'recoveries' which were reported in PACE were obtained, in part, by patients scoring a 60 on the SF-36 Physical Function subscale at the end of the trial. This in itself is a fairly low score, in fact the trial's entry criteria was a SF-36 65. Therefore a patient could not only have reported no improvement whatsoever, but actually could have had their scores decrease at the end of the trial yet still be characterized by the authors as having 'gotten back to normal', and as fulfilling a 'strict criterion for recovery' in the accompanying Commentary by Bleijenberg as well as in the article you cite.

However in the PACE trial protocol, the score necessary for a 'positive outcome' was a SF-36 75, and 'recovery' was to be defined as a SF-36 85, along with other criteria. Therefore the score alternately reported as fulfulling part of a 'strict criterion for recovery' and indicating patients had 'gotten back to normal' would not even have qualified as a 'positive outcome' according to the trial protocol, much less that of 'recovery'.

In fact, the PACE Trial Steering Committee recommended that the PACE authors increase the score needed for a 'positive outcome' from a SF-36 70 to a 75 when the PACE authors requested changing the trial's entry criteria from a 60 to a 65, specifically so that any reported improvements would be more than 'trivial', which the PACE authors initially did do in the trial protocol. However, as noted above, instead of sticking with this revised score necessary for a 'positive outcome' (from SF-36 70 to 75), after seeing the trial data (post-hoc) the PACE authors instead decreased it all the way down to 60 in the published paper, thus making the outcome variously reported as patients 'recovering' and 'getting back to normal' actually being less than trivial according to the language used by the TSC. In fact, patients could have reported no improvement whatsoever yet still be characterized as having recovered! Talk about magic tricks, huh?

Finally, Gijs Bleijenberg, the author of the accompanying Commentary in the Lancet which stated that a SF-36 score of 60 fulfilled part of a 'strict criterion of recovery', published a paper in 2010 in which he wrote that "A cut-off of (less than or equal to)65 was considered to reflect severe problems with physical functioning." How a score that is 5 points lower than one which 'reflects severe problems with physical functioning' (on a scale where higher scores mean better physical function) all of the sudden becomes part of a 'strict criterion for recovery' is anyone's guess.

This doesn't even mention how the PACE trial ME/CFS patients' average 6 minute walk test results after a year of 'treatment' were at or below those of patients with COPD, chronic heart failure, etc. It's just a magical, magical world and we patients are too stupid to understand it, I guess.

PS- I'm compiling a short-ish list of stuff like this about PACE, with references, if you want a copy email paceofcrap@mailinator.com and I can send you one. There's lots of other stuff about how the PACE authors deviated every which way from Sunday between the trial protocol and published results, for instance here's a thread which deconstructs the whole trial if you can make it through it, it's fairly long- http://forums.phoenixrising.me/showthread.php?4926-PACE-Trial-and-PACE-…

The normal lanes were empty?

The images were stolen from somewhere else?

It was all made up?

All the contamination was deliberate?

I do hope you have a place where you are safe.

For all of you who are wondering if this gel could be replicated... Let's take the position of the bands as number 1 problem. You run a gel to see the relative positions, and molecular weights, of your proteins - if they're 47 kDa, you can run it for 30 minutes or 90 minutes. Your gel is going to look very, very different, but it doesn't change the outcome... you'll still be able to see your 47 kDa proteins acting like 47 kDa proteins. They will look different, very different, on the gel, but it doesn't change the point of the experiment.

Let's say, for some reason, you want two gels to look exactly the same. You could load them with a robot, run them at and stop them literally the exact same second, and still you couldn't overlay them. Because the world is messy.

Joe, forget the MW markers. Any WB image has some random noise. As it was made abundantly clear by Abbie, If you over-impose two picts using the major bands as reference points, the probability of having the same smudges, speckles, scratches, dots and smears in two separate experiments is ridiculously low.

By Elliptical (not verified) on 02 Oct 2011 #permalink

Wow. That was...fast?

Breaking news. The entire WPI research program has been closed by the institute's CEO, and the facility is now locked down. It's former principle investigator, Dr. Judy Mikovits, is in active discussions concerning institutions to which she may move to continue her grant-funded research. The institutions must remain unidentified, for obvious reasons, but itâs important for patients to know that she remains committed to continuing this critical work.

http://scienceblogs.com/erv/2011/09/xmrv_and_chronic_fatigue_syndr_29.p…

OMG...you are a home wrecker!

Everyone is going to have to get a new F5 key after this weekend.

What the... I mean... um... yeah... O.o

new keyboard? crap I needed one yesterday cuz of f5!

Never in my effing dreams did I see this coming..NEVER!..I saw other things happening..not this...

You think Coffin's hiring..... Lipkin? bets on where her next job will be?

yes, I forgot...people will still be suffereing...(perhaps less)

Was that what you were referring to, ERV?

By Poodle Stomper (not verified) on 02 Oct 2011 #permalink

Good work ERV, the news just broke today that Dr. Mikovits has been essentially fired from WPI and the research effort has been shut down.
http://treatingxmrv.blogspot.com/2011/10/square-one.html

I am a CFS patient I am very happy with this news; I have grown more and more frustrated with the WPI over the past year. They have been a distraction and have made CFS researchers look crazy, not that there are many people who actually research our disease anyways. I really hope credible scientists will take a good hard look at this disease and have not been to turned-off by the actions of the WPI and the crazies on the internet to touch it. We desperately need scientist to take this seriously and we patients have no idea what to do to get researchers interested with the constant negative news and misinformation around CFS.

I hope people realize that since there is no simple or one test for CFS it has become a catch diagnosis for people with all sorts of crap that is not actually CFS. There are tests you can do for bio markers of CFS and a two day cardiopulmonary exercise challenge at the university of pacific which costs $2000 and shows CFS clearly. But since many CFS patients are too sick to work they can not afford a lot of these tests. So the point I am trying to make is many of these crazies you see on the internet may not actually have CFS or if they do they probably have other issues going on in addition to CFS. All the CFS patients I have meet are pretty sane, do not believe in XMRV anymore, and are too preoccupied struggling with day to day life to post hate messages on ever blog post about CFS that does not agree with there view on XMRV.

@195: Yeah. Scienceblogs.com is loading noticeably slower right now.

Never really gotten into this issue much and don't really have any personal connection, but today I spent a lot of time reading the forums in kind of morbid anthropological curiousity at the spectacle of people who wouldn't believe their own lyin' eyes. It's really sad though how hard this will be for the rest. Some of them are so invested, it is tragic and unfair that it came to this - that they believed that WPI and Mikovits were their only hope. The demonization that has happened to the other members of the scientific community will make it even harder to believe that someone else can, or will, take up the task.

Um... I actually dont know whats going on here either, unless the stuff I got was also sent to them and they knew the gig was up before official investigations started.

But... theyre still gonna have to deal with that, even if they break up.

doesn't matter too me PS! ERV obviously has powerful juju...1 magic trick and institutions close!

Whoa, I guess I didn't have to be impatient for too long. But still waiting for the details.

By Smurfette (not verified) on 02 Oct 2011 #permalink

Actually, Dr. M. and the WPI parting ways has nothing to do with this blog. Completely unrelated.

JKB-- So theres a lot more fun to look forward to. hehehehehehehehehe!

JKB..kinda figured that, but the timing is perfect...

I wonder if anything that has been questioned here will be addressed?

The concidence of this post and the announcement about WPI is pretty amazing. I am not at all positing correlation (there's zero evidence of that so far), but what a combined bombshell.

Breaking news. The entire WPI research program has been closed by the institute's CEO, and the facility is now locked down. It's former principle investigator, Dr. Judy Mikovits, is in active discussions concerning institutions to which she may move to continue her grant-funded research. The institutions must remain unidentified, for obvious reasons, but itâs important for patients to know that she remains committed to continuing this critical work.

Anyone know if thereâs still a vacancy at Thoughtful House The Johnson Centre?

It's Wakefield, all over again.
The patients who believe this junk and the scientists who produced it have learned nothing from their mistakes, because they deny there were any mistakes in the first place.

The XMRV/ME construct will never die, like the autism-vaccine idea, it will repeatedly arise, zombie like, out of the coffin of catastrophic science blunders even though the final nails have been driven in to it so many times people will have lost count (to paraphrase Orac).

So once again Dr D-J spreads the news that WPI have yet to break.

Talk about implosion. Of course D-J 'knew' the WPI were dodgy but couldn't bring herself to tell anyone...

And St Judy ain't to blame. No siree! Well good luck finding another job.

What next for WPI then?

I suppose at best they're incompetent and at worst fraudulent. The first time I saw that paper my thoughts were 1. Crappy blots. 2. Were's the load control?

Heh, "XMRV Global Advocacy" on Facebook blocked a bunch of people (myself included) who were persistently pointing out that he was completely wrong; there's now large sections where he's apparently talking to himself.

If anyone wants to get on his nerves, just start bringing up coefficient of variation with him (in relation to the two images being identical), and/or asking where he received his "extensive" training with Western Blot assays. Granted, he'll just post yet again stating that you can get identical results from assays, while dodging all questions and evidence.

More on topic, I'm guessing that nobody has heard any official reasons for the WPI closure?

@ John 186.

Looks like more CFS quackery.

Patients were 'cured' of their disability by changing the boundaries once the results were in.

It's another CFS magic trick. The exact same level of fatigue and disability classed as severe at the start of the trial, was then re-defined as normal once treatments had been given. MAGIC! The differences between the measures laid out in the protocol, and the post-hoc ones constructed for the paper are pretty dramatic. There's no way that they should have been able to class a sf36pf score of 60 as normal.

I don't know where this new paper got the 30-40% recovery rate figure from either. The treatments keep getting more effective, as the statistics keep being tinkered with. I can't wait for the WPI (or whomever replaces them) to start measuring the efficacy of ARVs in this way.

Hahahaha

By frozenwarnings (not verified) on 03 Oct 2011 #permalink

C'mon ERV, post it, you tease! You know you want to!

By Poodle Stomper (not verified) on 03 Oct 2011 #permalink

Does anyone know where Judy is getting her grant from? At first I thought all that mentioning of OSI doesn't mean anything since she's funded by private money. If she's indeed got some federal grants she'll be in an interesting situation (and we might get a lot of inside info from the WPI).
On the other hand, the "what's going to happen to Judy's grant research" doesn't come up; grants are to an institution, not a person, so unless WPI decided to let the funds go somewhere else (and somewhere else is willing to take on a researcher under OSI cloud) the research is going nowhere.

Give ERV a break. I know it is a train wreck and everyone wants to rubberneck and can't bring themselves to look away, but she has to get back to doing real work or she won't graduate.

I wonder whether dr D-J will now write a strong letter to the CEO of the WPI about feeling insulted by their decision and demanding an APOLOGY?

Also wonder what spin Gerwyn and v99 will try to give to these developments...

OWE

#220 Does anyone know where Judy is getting her grant from? At first I thought all that mentioning of OSI doesn't mean anything since she's funded by private money. If she's indeed got some federal grants she'll be in an interesting situation (and we might get a lot of inside info from the WPI).

The WPI recevied at last a $1million in federal grants after Lombardi et al was published in Science; there's been no substantive publication since the Science article so there appears to be federal funds that are still to be accounted for. Presumably federal grants come with a precondition that results must be made public. If pre 2010 figures are anything to go by WPI operated with only small proportion of research funded by private funds - small donations and an annual fund raising event. The Whittemores donated a large sum to the construction fund for the University of Nevada building in which the WPI is housed, but certainly pre 2010 there were no large single donations to WPI itself from the Whittemore's or anyone else. The transfer of the private VIPdx labs to WPI may have been achieved by a donation from the Whittemores (Harvey Whittemore was previously registered as the sole owner - apparently having purchased the business from Lombardi). Although the XMRV test was not licensed - VIPdx was a licensed laboratory and could presumably have represented a significant 'gift in kind' although income generation would only have acrued to WPI in the current financial year. It's not clear whether the XMRV test was provided at cost, or on a for profit basis. The whole set up was messy and it's difficult to see U of N having got involved if it weren't for the Whittemores contributing to the building project, and (as some have suggested) having influence in the Nevada legisliture, which is where the bulk funding came from for the building project.

@OWE:

My prediction (I know it doesn't make sense, but that's actually in favor of it):

As Vincent Lombardi is responsible for actually finding the sequences published thus far and submitting them to Genbank, this will be the perfect opportunity to explain away any past and future evidence of these obvious contaminants.

You see, Mikovits and Ruscetti were finding these TRUE antibody responses and were isolating RAL virus and making pretty pictures, while Vinnie was contaminating his PCR shit and obscuring real research by the real geniuses.

According to reporter, JM does have a R01, Mu. So at least, from the NIH, she's getting about ~300k for her lab.

Link to grant specifics. $300K+/yr from NIAID til Aug 2014.

Abbie, where were these two slides presented? You labeled one Science which was, I assume, the photo published in the 2009 article. Then you label one IACFS/ME which I assume means it was presented at a lecture as a change in evidence for XMRV in a couple of patients' blood samples after adding a chemical to the blood sample ONLY THE TWO PHOTOS ARE THE SAME.

I don't get it. It seems this means that Mikowits accidentally used the wrong slide at a presentation. How does this mean that there are no actual contagious retroviruses from mice that are now infecting humans? Also, how does this mistake with a photo at a presentation mean that Lo and Alter's work finding similar retroviruses in CFS patients is a lab contaminant?

Speaking of lab contaminants you might want to read this research article and take care of yourself.
http://www.landesbioscience.com/journals/cbt/ZhangCBT12-7.pdf

that grant says "awardee: Whittemore Peterson Institute"

Awardee is the person/institution receiving the grant and JM is their PI. She is not the awardee. It doesn't look like a personal grant to me

Abbie's hint, from #147:

The scanned image always has all the labels and stuff that everyone always puts on their gels? Right?
:)

Right.

My speculation is that someone got ahold of the full Ottawa PowerPoint, and uncovered the box that was blocking the "real" labels from the scanned image, which may or may not correspond to the labels from either the Ottawa presentation, or the Science paper.

Deckoff-Jones' latest blog entry is worth a read. Apparently there is some turmoil at WPI now.

A slightly more reliable source, confirms that the bartender has really been let go.

It looks like the Wall Street Journal has a short story on the WPI mess. It cites a dispute over the use of cell lines as the cause of the rupture, but we don't really know the full story yet.

http://blogs.wsj.com/health/2011/10/03/scientist-who-led-xmrv-research-…

Judy A. Mikovits, the embattled scientist who led the research team that found a possible link between the retrovirus XMRV and patients with chronic fatigue syndrome, has been terminated from her job as director of research at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev.

The controversial finding, published in a 2009 Science paper, excited patients and researchers who have long been searching for a cause for chronic fatigue syndrome, which has an array of debilitating symptoms that include cognitive difficulties, severe pain, and overwhelming fatigue. On Sept. 22, the authors of the paper, including Mikovits, published a partial retraction of the findings in Science, after two of the 13 study authors found contamination in blood samples from patients.

A week later, Mikovits was fired, she told Health Blog.

In a letter from Whittemore Peterson President Annette Whittemore to Mikovits, which was reviewed by Health Blog, Mikovits was terminated after refusing Whittemoreâs direct request that cell lines be turned over to another scientist at the institute who wanted to do research on them.

In a letter of response, Mikovits said that the cells were for use in a specific NIH-funded project and that it would be inappropriate to use them for another purpose without her knowledge and consent.

Mikovits is a principal investigator on an ongoing NIH-funded study that will test CFS patients and healthy controls for XMRV or related viruses, and she said that she plans to take her grant with her to a new institution where she wants to continue her work on CFS.

But like many things in the long-running XMRV saga, this may not be simple. Institutions must agree to relinquish grants, and at this writing, it was not clear that the Whittemore-Peterson institute is willing to let the XMRV project go.

Weâve reached out to the Institute for comment, and will provide an update when we hear back.

Paula:

Who said it rules out viruses? All this is about is the fact that, at best, Mikovits/WPI had some quality problems with their research, of which this is but one example. At worst, it is evidence that someone at WPI has been engaged in very questionable research practices. Unfortunately there are some reasons to think it's the latter, including some that we haven't seen yet. And I do mean unfortunately--I honestly think this will cause more harm to CFS patients, in the long run, than if it was simply the exposure of mistakes and/or incompetence on the part of Mikovits/WPI.

This has no bearing on the possible role of viruses in CFS other than severely undermining the primary evidence that's been used to support linking one virus (XMRV) to CFS. But again, who said it did? That's not what this post is about.

Wall Street Journal blog Health Blog reports that Mikovits was fired for refusing to share cell lines. It also says she intends to take her grant elsewhere, but as pointed out above, the NIH grant is to the institution, not to the individual, so it is not her call. Very messy.

ghholm, you don't mean that old MS Office behavior of saving whole pictures even if they get cropped to show only a part ;)

I don't know how these things are supposed to work but that WSJ article makes it sound like the Whittemores are even shadier than Mikovits if that is possible.

By Smurfette (not verified) on 03 Oct 2011 #permalink

Not just refusing to share the lines, but refusing a direct order - from Whittemore Peterson President Annette Whittemore - to share them with another scientist at WPI.

"In a letter from Whittemore Peterson President Annette Whittemore to Mikovits, which was reviewed by Health Blog, Mikovits was terminated after refusing Whittemoreâs direct request that cell lines be turned over to another scientist at the institute who wanted to do research on them.

In a letter of response, Mikovits said that the cells were for use in a specific NIH-funded project and that it would be inappropriate to use them for another purpose without her knowledge and consent."

My speculation is that someone got ahold of the full Ottawa PowerPoint, and uncovered the box that was blocking the "real" labels from the scanned image, which may or may not correspond to the labels from either the Ottawa presentation, or the Science paper.

Oooh ooh I like this. And they would be that stupid.

By Smurfette (not verified) on 03 Oct 2011 #permalink

@Smurfette

Really?

I have the same experience as you in this (I haven't got a clue) but my impression from this article is that Mikovits is more at fault. She instantly goes to Amy from the WJS (which makes this more or less a Mikovits POV piece BTW) and while I (like I said) don't know how this sharing is supposed to work, it seems like a reasonable request - the WPI has an NIH grant to study XMRV. not Mikovits personally. Also, while she showed the letter to the WSJ, she apparently didn't want the name of the other WPI scientist (Lombardi?) out.

Boy is that a lame excuse. It is my understanding that the NIH encourages maximum sharing of research resources including cell lines. NIH encourages anything and everything that advances science and is not forbidden, unethical, dangerous, etc. Especially when those resources are developed with NIH funding and which are not depleted by sharing (as in cell lines which can be propagated).

@RRM - Anything that Judy says is suspect whether I know anything about the subject, but even without that part, it sounds like the WPI plans to keep going with an even "better" scientist.

By Smurfette (not verified) on 03 Oct 2011 #permalink

One almost begins to get the impression that perhaps she does not want anyone else working with her reagents.

WPI has released a statement on their fb page...

posting a direct link lands me in comment control!

Extract from statement:

'The WPI remains committed to a comprehensive research program. Our research team and program remains active, and our lab open to authorized employees. We will continue the critical work of finding answers to M.E. and related diseases.We will use the opportunity created by the departure of Dr. Mikovits to do a full evaluation of our research lab and current research projects.'

So... Mikovits out and business as usual? I don't think so. Something smells.

"do a full evaluation of our research lab and current research projects"

Now that is an interesting turn of phrase.

That probably means they're dropping the gammaretrovirus direction.

Ah well all the more 'hits' for Abbie :)

@mo:

They don't say they are evaluating their research direction -although I suspect that is happening as well.

What they say is that they ae evaluating THE LAB and the CURRENT research projects.

Why evaluate "the lab"?

Update from Wall Street Journal:

'Whittemore told the Health Blog that she and Mikovits were ânot seeing eye-to-eyeâ on who controlled the cells. Research on retroviruses and their possible connection to CFS as well as other diseases continues, she said. âWe will keep going down that path as long as it continues to show promise,â Whittemore says.'

[Cough]

ChicagoScience Trine Tsouderos
"Journal Science is investigating allegations of figure manipulation in 2009 paper linking #mecfs to #xmrv. Stay tuned. Story to come."

@gholm

"My speculation is that someone got ahold of the full Ottawa PowerPoint, and uncovered the box that was blocking the "real" labels from the scanned image, which may or may not correspond to the labels from either the Ottawa presentation, or the Science paper."

Seems like a good guess (see my post above). And it looks like it might be the Science paper.... :-o

Hooray, hooray, the witch is dead!!!

I never thought it would happen so quickly. I could not be more delighted. Thank you so much for your work & that of the many others.

Brilliant!

Deckoff-Jones' latest blog entry is worth a read.

Having nutters commenting in one's blog entries is no reflection on Deckoff-Jones (or indeed on Deckoff-Jones's defense of Mikovits). That said, there are some clown-car-pile-up weapons-grade-stupidity nutters commenting there.

I counted *two* citations of notorious cancer fraud Burzynski as another victim of the Medical Establishment. Vaccines are mentioned. Elaine Defreitas is noted as yet another martyr of suppressed science (despite the details of Defreitas' claimed discoveries, which differed enough from Mikovits that if either one is right then the other must be completely wrong).

I half-suspect some of ERV's regulars of going over there and adding crank-magnetism comments just to stir things up.

By herr doktor bimler (not verified) on 03 Oct 2011 #permalink

Well, the "mission" of the WPI is to find a cure to CFS, because their teenage (?) daughter is a patient. This is why the institute exists; CFS is their research direction. When Mikovits had something promising to offer (70% of patients XMRV positive + science paper) they were happy to have her. But now that the BWG showed that her results were bullshit and the Whittemores probably know what ERV knows, they maybe decided to fire her and get rid of the gammaretrovirus research and keep the grand money for more promising CFS projects. Hence "evaluating the lab and the current projects" but not the reasearch direction, which is CFS and not XMRV/gammaretroviruses.

This is speculation, but it makes sense. The Whittemores want to see results, not fund Mikovits crazy crusade of making her retrovirus expertise economically useful while not working on HIV.

New tweet by Trine:

Science: "We are aware of allegations of mislabeled images in 1 of the figures in the 2009 Science paper + in meeting slides."

Go, Abbie and anonymous person!

gotta love Trine..and erv and everyone who helps further science....not hinder it!

I'm so excited that I'm about to piddle. There's just something I love in watching a person like Mikovits crash and burn. I think its being self-inflicted makes it all the worth the while. Schadenfreude is a beautiful thing.

I hadn't seen these quotes from Mikovitz before.

http://retractionwatch.wordpress.com/2011/10/03/why-didnt-xmrv-chronic-…

"The only conclusion is that they were contaminated in the Cleveland Clinic."

"We decided not to throw them under the bus. We donât believe itâs in the interests of science. People make mistakes. They worked very hard to sequence the virus, and now we have to do the next generation."

"I told all the editors all this, and they agreed there was no reason to retract the whole paper."

By Richard Jefferys (not verified) on 03 Oct 2011 #permalink

RRM, it's about to get a whole lot crazier. Even her mild-kook followers are going to be slapped hard shortly. The heavy kooks will, as always, continue to ride their hobby horse.

Retraction Watch has mentioned ERV's contribution!

Looks like ghholm at 230 guessed right

"A copy of her PowerPoint presentation circulating among an email group also reveals an apparent third version of the image, with a third set of labels, when formatting is turned off."

This is insane, how stupid can you be to let that leak? Congrats ghholm, good guessing.

Retraction Watch has mentioned ERV's contribution!

So did Trine in her article.

Dancing Rodents to you Abbie on making a Tribune article!

I'm kind of curious what those third set of labels are.

This is like those psycho criminals who intentionally leave clues and get a power trip out of it. I think Judy is enjoying this.

Time to send a couple e-mails to Chase and Vivint.

By Smurfette (not verified) on 03 Oct 2011 #permalink

From the Tribune article:

"It is our understanding that some patient ID numbers may have been changed to a new set of coded numbers during the research to protect their privacy before publication," Whittemore said. "We will work with Science in hopes of addressing their concerns and to gain a full understanding of the cause of any potential discrepancies."

Again, speculation: I'm guessing that the third set of labels is the "real" patient numbers. I'm guessing, too, that they probably correspond with the Ottawa conference patient #'s, thus invalidating the #s shown in the Science paper.

ghholm, if you're actually shooting from the hip rather than being on that email list yourself... well if you get this right you should go out and buy yourself a lottery ticket.

ghholm needs to apply for the Randi Million Dollar Challenge!

... Maybe we can use it to recoup some of the wasted money... :-|

EvilYeti, don't be a gratuitous shithead. What do you do on for chuckles, stand outside of naturopath clinics waiting for cancer patients to walk out so you can make fun of them?

Holy shiznit...

No, I'm not on that email list, nor do I have ESP, just speculating based on the hints ERV dropped and the comments in the Trib. article.

But even still, I never imagined it would be that outrageous. What a total debacle! No way whatsoever for Mikovits to dig herself out of this hole.

Thanks so much, ERV, for your coverage on this! I had my students read the Science paper and follow the ensuing controversy in my Virology class last year, and have a bunch of students eagerly following the story, but I never thought it would end up here! You (and the anonymous tipster) have done a great service to the virology community for latching on to this issue and helping to bring it to light. Well done!

No matter how many times we say it, (and I think that it gets lost in all the vitriol and anger), the real tragedy is still for the ME/CFS patients that got so excited about a possible cause/cure for their illness, and who got essentially suckered in by Mikovits and VIP Dx. There should be restitution for those people, who have already suffered enough. As a scientist and educator, it saddens me to see the scientific process so sullied by greed and ego, but in this day where "translational science" is all the rage, and the time from bench to clinic is so short, I forsee this happening more and more in the future (and, unfortunately, it doesn't take a winner of the Randi challenge to see it coming)!

Yes, ghholm As an honorable friend of mine asked me today: "what kind of bitch does this to sick people?"

Sadly, the question answers itself. :*(

I hope that those with CFS don't get discouraged by this. There are still excellent research approaches to CFS that have not been tried.

MattK,
I'm pretty sure there are irrefutable objective tests for cancer. CFS not so much.

There are many disorders that have identical symptoms (such as Pernicious anemia). Occam's razor, dude.

"the real tragedy is still for the ME/CFS patients"

yes - which is a large part of the reason for the vitriol and anger. Not the only part - scientists get angry when science is abused this way. But worse - this was bad science done in a way that hurts people who need help, not false hope. Not just bad science - it is getting really hard to avoid the conclusion that at least some of the work was baldy fraudulent.

There SHOULD BE anger.

EvilYeti, I see what you did there. You can't suggest that CFS is nothing, or all in people's heads, and then defend that statement by saying that it is really something else. Also, I'm sorry that you don't understand Occam's Razor. It is the most parsimonious explanation for all the data. You can't just pick one made up fact, say your dipshit idea explains that, and then declare "Occam's Razor, dude." Well, you evidently can, but it makes you a fucking wanker.

There are many disorders that have identical symptoms (such as Pernicious anemia).

Dude, one of the usual symptoms of untreated pernicious anemia is death. That's not identical.

By herr doktor bimler (not verified) on 03 Oct 2011 #permalink

What? Trine didn't interview one of the Fruitloops at the Fake Professor Forums to giver her article some balance?? (JK)

I'm not suggesting it's nothing.

I'm suggesting that if meets the symptoms for anemia *and* in the absence of a pathogen, why go looking for one?

I'm kinda skeptical that way.

@ EvilYeti:
"meets the symptoms for anemia..."
Wow. You know nothing about the illness, do you?

Busy with other stuff for a few months I stop by today to check all the usual net blogs and forums to get an update/overview on the state of "ME/CFS/XMRV/Whatever.

Wow! What a mess. If you are a fellow patient, it should be pretty clear that from here on out into the foreseeable future, you will be ON YOUR OWN now in every possible meaning of the term. Best of luck to you.

ME/CFS etc. is now officially a pejorative label that you need to avoid at all costs if you want to survive without ridicule, a psych rap in your records, or worse. At least there is no simple blood test for it to pin you down with a diagnosis. Unfortunately, neglect is the best you can hope for now from government, medicine, or science.

However, you can take solace in the knowledge that at least you do not as yet have a legitimately discovered, cancer causing, immune damaging, incurable retrovirus to deal with. Look on the bright side.

Holy Moly...3 labeled sets....3!

even if Judy blames this on someone else..she was and always did the presentation of the slide.... she had to know..

she is toast as a scientist...unless someone can figure out how she survives this cuz I can't see it..

Priceless how Guy Fawkes and all his socks are STILL posting everywhere that it's ERV who doctored the slides cuz see..they DO NOT MATCH...It's pretty awful of me to say (cuz this person is obviously ill) but I just want to point at him, stare, and giggle..as JC says.. Schadenfreude at it's best...

Am not convinced Whittemore knows what she is talking about in Trine's article.

What are the odds that Lombardi et al. will be retracted in full? Not because of the 'slide' manipulation (though that might I suppose lead to an investigation of what remains of the original paper), but generally.

I mean the authors were asked to voluntarily retract by Science, right? They refused. Silverman's findings led to a partial retraction and now Science are considering their position as well as looking into Abbie's revelation.

What really bugs me though is those patients who were told by Mikovits and/or VIPdx 'You are positive [or even double negative?!} for XMRV'.

And yet now the latest spin is that 'Actually, maybe it wasn't XMRV but it is definitely a HRGV'?!

No paper. No evidence (other than at conferences ;)). What is going on here?! Abbie no wonder you are pissed.

Can Mikovits be disbarred or something? And Whittemore? Why not Lombardi as well (for screwing up his commercial 'tests')?

Or even false negative! Lol ;)

Yes, ghholm, I have been thinking about those patients who were literally donating out of their welfare/disability food money for this. I think they can afford to pay back all the donations and NIH grants with interest and damages....

daedalus2u, this was quite exciting not discouraging, at least for me. (I think I refreshed the page 100 times today.) I am glad that this has only been 2 years and not 20 years like the vaccines and autism saga, though still a little antsy that they will somehow manage to weasel their way out or that it still won't be the end. Is Wakefield still running around? Anyway, there are several interesting NIH-funded CFS research projects at respectable institutions right now. Maybe it's a good thing that they're just working quietly keeping a low profile so they don't get terrorized.

By Smurfette (not verified) on 03 Oct 2011 #permalink

Can someone tell us what the third (covered up) set of labels said?
I think this is the crucial point if you are alleging fraud rather than incompetence.
If, for example, the covered up labels said the same as the 'Science' paper then it looks like fraud.
However, if it said the same thing as the visible labels on the Ottawa slide, but simply gave different numbers for the patient samples (for example, if it said "patient X" instead of 2905 and "patient Y" instead of 1674) then it could still be claimed that it was a mistake rather than an attempt to deceive.
In other words the mistake was to take the wrong image and make it into a slide. Changing the patient numbers is nothing unusual in medical research, it's simply a consequence of patient confidentiality agreements - so long as you don't claim it is an entirely new experiment (for instance by claiming you replicated an earlier result with "new" patients.)
For it to be ethical all the patient and control lanes must remain consistent (you cannot have one set claiming lane 2, for example is a normal control in one of those labels and have the overlayed set of labels calling it a patient sample.)
Someone must have access to this third set of labels.
Can we see them?

EvilYeti, don't feel bad, I'm a CFS patient and I felt the exact same way before I got sick.

The easiest explanation, and the one that is growing to be the most prominant, is that ME/CFS is either comprised of subtypes or perhaps several diseases under the moniker 'CFS'.

For an example take two groups, Group A and Group B, with each group having 50 patients for 100 patients total. Then say 35 out of Group A had a certain lab abnormality, response to treatment, etc., while 40 out of Group B had a different abnormality, response to treatment, etc. This would result in 70% of Group A and 80% of Group B (35 and 40 out of 50) having a certain abnormality, response to treatment, etc. However if you do not subtype the two groups, you end up instead with 35% and 40% (35 and 40 out of 100) which is what is thought to happen with most ME/CFS research. There's all kinds of abnormalities, sometimes quite severe, but they often are not shared by all patients and thus get left behind.

The above doesn't even begin to consider the issue that some of the most promising recent ME/CFS research findings have been obtained following exercise challenge. In fact, for most previous studies patients would actually rest for weeks or months prior in order to withstand participating in the study!

For an example of both of the above, one can look at the results from the recent University of Utah ME/CFS gene expression/exercise challenge study, which found both that ME/CFS patients' gene expression was not different to controls prior to undertaking exercise challenge but rather only became apparent following the challenge, but also that an apparently unique subgroup popped out- http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potent…

The thinking is that once distinct subgroups are able to be objectively diagnosed, then the associated biological abnormalities should start standing out more clearly instead of being lost in the shuffle as they are now, as exemplified by the following from the study- "The majority of (the α-2A Decrease Subgroup) (71%) also had clinical orthostatic intolerance and âsuggests that different mechanisms cause the debilitating fatigue in this subgroup.""

BRAVO BRAVO! ENCORE!!!!

By Joe Grove (not verified) on 03 Oct 2011 #permalink

@294: well that's pretty cut-and-dried, innit?

The label on the left hand blot in the picture anonymous posted is the following:
Normal T 3/11
Normal T 3/21
2905 5 AZA 4/11
PBMC 4/11
PBMC 4/10
1674 5 AZA 4/11
PBMC 4/15
HCD.57 SFFVP
So if it is the case that this is hidden within the powerpoint slide then it is indeed unethical.
For a start you do not call patient samples the same as normal controls.
Second, from the labels the blot is clearly a 5-AZA experiment and not what it was described as in the Science paper.
Is the powerpoint presentation the source of this picture?
If it was then I think we have the smoking gun.

Well that explains it. Sort of.

So in the Science paper, they didn't say the CFS patient samples were treated with 5 AZA. Interestingly, they didn't include the crucial 'Normal + 5 AZA' control. Looks like a deliberate attempt to misrepresent manipulated patient samples in the Science paper.

I would be very interested to see what the lanes for an actual Normal + 5 AZA would look like - I imagine it would be pretty similar to the CFS patient ones. If it supported their hypothesis then they would have included it. It's such a basic basic thing.

Seems like at the conference they were sort of 'coming clean' by showing the real data, but falsifying control lanes (as even they realise they're a prerequisite for their data to be interpreted).

Idiots.

By Interested Vir… (not verified) on 04 Oct 2011 #permalink

The date written on the picture to which anonymous linked is the 23rd of April 2009. If the labels are correct it's not a recent experiment and would have been performed well before the Science paper came out.

A patient here. I read over the blog and all the comments, but still am not sure what (beyond the idea that Mikovits clearly seems to have used the same slide in presentations purporting to be about two different studies) you're suggesting here.

Is it possible that the whole thing was purposely fabricated fro the start rather than a result of contamination? Wouldn't that be hard to do, since multiple labs were involved? How many people would have to be participating in such a fraud for it to work?

Or is it that you're suggesting that the original paper was contamination, but Mikovits was so vested that she then started making things up? Or something else that I'm not understanding? What's the worst case scenario here?

And in simple language please -- it might go a long way to making patients get through this if they knew clearly what the possibilities are.

Also briefly -- even if this was a total fraud, I hope that scientists don't give up on this disease. People are really suffering, not everyone who has it is wacko, and it's unfair to punish the patients further for having been taken advantage of.

Thanks very much for any help with explanations that folks can provide.

Also, the antibody is against XMRV reverse transcriptase, not gag or env like in Science or Ottawa.
I wonder if those antibodies are cross-reactive against RT of ervs, which should also become reactivated by 5-AZA? lol.

Oooh! ERV!! ERV! Do the magic trick again with the three slides together! Do an encore presentation!

By Poodle Stomper (not verified) on 04 Oct 2011 #permalink

Correction: In Science and the Ottawa presentation it's both anti-gag.

... Maybe we can use it to recoup some of the wasted money... :-|

Aren't there mechanisms in the US for recovering grant money if misconduct can be proven? Being from the UK I'm not so up to speed on US rules.

If the pic above is genuine (no evidence to suggest otherwise yet, but it should be checked) then I would hope this could quite quickly move into formal investigation.

I just hope the CFS patients can appreciate who is really helping them here and who isn't, no matter what their bedside manner is like...

OK...I agree with PS..another magic trick!

thanks anon and for your part in this contribution...

...gotta think that is the 3rd slide and like Sigmund, possibly the smoking weapon!..
Faye..going to be hard to explain this away..the same slide labeled 3 different ways..How does that happen? Does it go all the way to the beginning, back to the science article? Well, Judy is going to have to explain that!

I'm like a deer got in the headlights...I can't look away!

@Faye

I'd put my money on your second option. I guess most fraudulent scientists don't make up everything. They usually find something that is wrong, become convinced it is right but then cannot produce the additional data in support of their finding.

That is when they start to make things up - because they "know" they're right and they believe the doctored results are actually true and further research will confirm this, they are confident the fraud will not see the light of day.

I know that as an European leftie I shouldn't get all political, but I guess it's a bit like making up evidence in support of Iraq owning WMD's in order to justify an invasion. They thought they would find them anyway, in which case nobody would have questioned the incorrect evidence.

There is a brain dead idiot called V99 on the MECFS forums who constantly whines on about the fact that the gels look identical because ......every gel would look identical, of course!

The new slide shows how untrue this is - there are 2 gels, and if one compares the HCD57/SSF +ve control in the last right hand lane for both western blots, even a kid who cannot get more than 1/10 on a "spot the difference" cartoon can see that they are distinct. They have identical bands, but the gel pattern is clearly different and individually distinctive.

Faye:

Here is a (hopefully clear) summary of the recent events in XMRV:

1) XMRV itself was found to be a laboratory artifact; a virus made when human prostate cancer cells were repeatedly inoculated into different mice. It does not exist in nature, and did not exist at all prior to the early 1990s.

2) Some of the analysis (the PCR experiments) in the original Science paper were found to be the result of contamination of some of the samples with an artificial plasmid DNA encoding XMRV. The source of the contamination is not clear, but given the circumstances and the extreme care that the Silverman group went through to reduce contamination, it is likely that the contamination originated at WPI. Why this contamination was only found in "patient" samples and not in normal controls is unknown, but highly suspicious.

3) Multiple other groups, including the Blood Working Group, have found no evidence of XMRV in any of the samples. Even the groups trying to link XMRV to CFS can't get a positive signal if they are blinded to the origin of the samples (that is, they don't know which sample is which).

4) Now, it seems as though some of the other data in the Science paper is fraudulent. The immunoblot that was shown in Fig. 2C is actually an image of a completely different experiment, one that artificially manipulated the samples in a way that would induce expression of endogenous retroviral proteins.

Taken together, it is now very difficult to trust any data in the original Science paper. It appears to be a deliberate attempt to manipulate data, in a way that takes a laboratory artifact and makes it into a bona fide result. My guess is that the Mikovits group found some provocative preliminary data, as they ran some PCRs on their original samples and found (the contaminating) XMRV. They were so excited about the possible implications of this that they ignored/underestimated the possibility of contamination, and in the rush to publication they manipulated their data so as to look more robust and impressive and get the paper into Science. Everything since then has been a house of cards, built upon a very shaky foundation.

So, XMRV has nothing to do with CFS. While it is not out of the realm of possibility that some other viral illness, possibly even an endogenous human retrovirus, may have a role, any XMRV findings are likely artifactual. (And, while I am not an expert on this, the epidemiology of the disease makes a transmittable viral illness unlikely as the cause of CFS).

I know that the majority of the scientific community is sympathetic to your cause, and would like to determine the cause/origin of CFS. We are frustrated by this apparent case of scientific misconduct, and regret all of the time/energy/money wasted on this. Hopefully, one benefit of all of this will be to bring increased attention to CFS, and direct more scientific interest into actually finding the cause(s) of this disease.

Amusing and clever. Applause. Great anonymous catch. Too bad the magic trick turned sleazy when you began name calling. You just don't get that whole professional thing do ya?

@deetee #308

I don't think you should waste too much time on the holes in V99âs arguments. Aside from claiming that the slides are of the same experiment and so should be identical (I wonder if they mean that theyâre both Western blots; but then what the hell do they think the point of the test is if they believe the results are always identical?), they have also claimed that they donât matter because Abbie faked the images and furthermore that the two images arenât actually identical.

They also started the thread called âERV may be quitting virology after this latest blog sham -2 false claims in blogâ , which has got to be the some of the nummiest irony ever.

So yeah, V99 (and several other posters on that board) have religious faith in Judy Mikovits which allows them to believe several contradictory things at once and which will literally trump the evidence of their own senses. All in all, a frightening display of cognitive dissonance.

If they werenât such a needlessly hostile raging arse Iâd feel sorry for them. However, since they clearly have so few ethics and such little hesitation in making shit up, Iâll retain my sympathy for those CFS sufferers genuinely looking for honest answers in good science.

(Full disclosure - I love the comic âV for Vendettaâ and I do tend to hate stupid gits on the internet who are too dumb to read it but reference that Wachowski shitefest as though that makes them revolutionary and edgy. In this instance I donât feel that bad about my prejudices).

Odd. Apparently I have a warped idea about what professionalism means. I thought the unprofessional bit was fudging data and hence falsely raising patients hopes; convincing patients to spend large amounts of dosh on unreliable tests; using government funds to publish mislabelled and possibly falsified data; wasting vast amounts of other researchers' time and grant money on a wild goose chase; and accusing other researchers of misconduct when they can't replicate your magic results.

Fortunately, KAL's around to explain that unprofessional actually means name-calling. Phew. Glad that's cleared up for me.

More seriously, thanks ERV, anonymous and ghholm, in particular, for your eagle-eyes and explanations. Can anyone shed any light on whether lanes 4, 5, and 7 in the new image are likely to come from healthy or sick patients? The labelling seems odd to this layperson.

By Pipsqueak (not verified) on 04 Oct 2011 #permalink

@ Faye:

Aside from fraud and contamination, an underlying reason for this whole affair seems to be that Mikovits desperately wanted to find a retroviral cause for a serious disease other than HIV.

Here is how it happend: Mikovits worked for some decades in a HIV lab. Her expertise is therefore, strictly, retrovirology. But just 3 retroviruses were ever shown to cause human diseases: HIV (and all its many subtypes), HTLV-1 and HTLV-2. And while there are many retroviruses known, most of them can't infect real, complete, humans and many more infect humans, but don't cause any diseases. If you want to get a job in retrovirology, you are almost required to work with HIV, because it causes the most prominent disease out of these 3.
Mikovits became interested in CFS solely for the retrovirology. She heard from Lombardi that RNAse L is a biomarker for CFS, and from Silverman that his prostate cancer cells express RNAse L and are infected with XMRV (which is a contamination, see ghholms post). She specifically began to work on CFS to prove that XMRV causes CFS and that bias led to the mess we have now. If you view her motivations in this context, some of her actions, like blaming other CFS researchers who can't reproduce her data of fraud and don't admitting to mistakes to the finding of XMRV/HGRV in patients, make more sense.
But that XMRV causes CFS was a highly unlikely hypothesis from the beginning, as it was just based on the expression of a single biomarker.

Pipsqueak, PBMC means "peripheral blood mononuclear cells" - in other words they are normal control white blood cells.

Thanks Sigmund. So, although both the patients and the healthy controls have PBMCs, anything simply labelled PBMC must have come from a healthy control?

Is it normal to run a western blot without a unique identifier for the source of each sample?

By Pipsqueak (not verified) on 04 Oct 2011 #permalink

Pipsqueak, the loading they have done is very strange. It is certainly not one most researchers would do for a figure in an important journal. For example look at the order:
Normal T 3/11
Normal T 3/21
2905 5 AZA 4/11
PBMC 4/11
PBMC 4/10
1674 5 AZA 4/11
PBMC 4/15
HCD.57 SFFVP
The 2905 5-AZA treated sample seems to be compared to two 'normals' which are T-cells - a selected subpopulation of peripheral blood white cells.
The other treated sample, 1674, is compared to PBMCs - in other words all the white cells in 'normal' blood.
All samples do seem to have an identifier (I think the date - perhaps the date of isolation - is used, for example 4/15 in the last PBMC is probably a normal white cell sample collected on the 15th of April)

Yes, PBMC will probably have come from a normal control. I think they are identified by date of collection.

I've never really read the CFS patient forums much before, so I don't really know if they are crazier than usual over this, or if this is their baseline. But some of them seem to really be going off the deep end over erv's blog. They are starting to remind me of the crazy "nurses" in the "World According to Garp."

Keep your eyes open erv, and don't open any unexpected packages in the mail, etc.

Cheers. That was my guess, but given the confusing nature of this debate, I didn't like to assume. I can't understand why every source isn't uniquely identified though.

By Pipsqueak (not verified) on 04 Oct 2011 #permalink

Probably no unique identifier as it's pretty standard just to use blood from a random healthy person as a negative control. Often someone from within the lab who offers to give you some blood.

By Interested Vir… (not verified) on 04 Oct 2011 #permalink

They can also be more specifically identified in other parts of the lab notebook in which the worker glued the gel picture in, for example on the entries for the specific dates.

Fairy nuff. It still seems a little odd to me that you wouldn't give all samples a unique ID to track them through the analysis process (and help with blinding), but I'm glad I asked people in the field, rather than just assuming poor practice.

By Pipsqueak (not verified) on 04 Oct 2011 #permalink

Thanks for the explanations. Would anyone be willing to address this comment?

*

XMRV has never been shown to be a contaminant. The viruses discovered by the WPI and NCI are human gammaretroviruses. Silverman only gave them the wrong name after he sequenced the VP62 plasmid contamination samples that was only in his lab. The WPI and NCI samples have been proven to be VP62 plasmid contamination free. The data now shows they found what Lo and Alter did. HGRVs.

Abbie Smith has posted images that have not come from the paper or gel. Quiet an artist made them.

Faye, ERV has quite clearly indicated the source of the pictures. As you can probably not doubt the published material in Science, you're saying the artist is Jamie Deckoff-Jones who published the Ottawa talk slides?

Actually, most of the patient forums are like that all the time...they basically have this mindset that CFS is incurable and you can't do anything about it. If anyone comes on and says they recovered, people say 'you didn't have ME in the first place' (see all the letters that John Greensmith writes to newspapers telling people they didn't really have ME, but just had fatigue). Mention CBT or GET in these forums and then the shit really hits the fan. If you're a patient, these places are best avoided.

I don't think these people realise that they're just making themselves look like crazy nutjobs.

PS, I'm a recovered patient.

Faye,

You can go to Science, log in and read the paper to see one of the figures ERV compares (I think it just needs a free registration, but I can't check that from my current computer). The other is from the slides from the Ottawa presentation, which is on Dr JDJ's blog.

All ERV did was change the greyscale on one image to red and the other to blue and to play with transparency, so that when the images are overlaid, pixels that have both red and blue pigment will appear purple. Areas where the two images differ will appear blue or red. The fact that there aren't any red or blue bits in the overlaid image is a pretty big clue that we're looking at the same image with different labels.

I suggest you go and take a look at the originals to satisfy yourself as to the veracity of ERV's sources.

I'll leave the rest of your comment to someone who's followed this more closely than I have.

By Pipsqueak (not verified) on 04 Oct 2011 #permalink

Two naive questions for the working virologists / MolBiologists in the crowd.

1. If one uses 5-Aza as a demethylating agent (presumably to induce expression of provirus), would this not also induce express of of Gag, Env (and other viral proteins) from endogenous retroviruses of the human genome? (thus requiring 5AZA in healthy control, for comparison, at minimum?) And would this mean that one must be very careful in an experimental design to distinguish endogenous Gag/Env expression from XMRV expression?

2. The 'new' third presumed version of the WB, linked @296, gives a date of 4/23/09, and what I assume is the exposure time of '10 sec'. Now, its been 20 years or more since I've run a western, but that strikes me as a pretty hot western, and a very short exposure. Am I wrong? Does this imply that their wash conditions weren't all that stringent?

the me/cfs forum is interesting.

There's at least one poster there, v99, that seems to believe that that gel artifacts are perfectly reproducible. Or that band intensity is going to be exactly the same, and shape the same way... these people don't look at westerns very often.

John, I'm completely in agreement that CFS is "real" in the sense that any mental illness is real.
Depression is unambiguously real, as is schizophrenia. And I'm also of the opinion that there is compelling evidence that there may be a viral agent at work in some of these cases as well. But I'm going to need see evidence in that case.

Unfortunately, the study you have presented only reinforces this hypothesis. When comparing a control group of people whom are engaging in at least a moderate level of physical activity with ones that are not, I am absolutely not surprised that there would be changes in gene expression. I would be very curious if one could "induce" CFS in a control group by simply restricting their physical activity.

Anyway, look at the treatments for CFS. Most of it amounts to some form of physical and/or cognitive therapy. And ask anyone that gone through that how hard it is. Or if it takes a long time to recover from after a session.

Faye, read the previous posts about XMRV and CFS on this blog, there you will find that XRMV is a contaminant and how it was proven, and that Lo's and Alter's samples were contaminated by different mouse DNA and their viruses. Also, no such thing as "HGRV"s exists, because gamma retroviruses don't infect humans. It was never shown.

Pipsqueak: When you work in a lab, you write on your samples whatever you like and what makes it easy for you to identify them without switching them up with something else. What you write on it also has to aid the high quantity of experiments you do, and the limited writing space on the sample tubes. It's common to just name your samples on a gel for example #1-#20, then identify #1-#20 in the lab book. If there is blinding, the worker is only blinded one time, when she gets the unprocessed samples, but after that she has to identify them clearly in every single step, to not mix them up. You only fully identify the samples in the resulting paper (like the Science one), thesis or talk (like in Ottawa) and the information has to be unambiguously found when someone reads the lab book.
In the case discussed here, we can get sufficient information by the labelling of the lab worker to conclude that neither the Science nor Ottawa labelling is correct, and that the original experiment done by the lab worker does not support the point they made in the Science paper.

That MECFSforums thread is astounding. I wonder who V99 is. I have NEVER seen such intense and persistent arrogance of ignorance. It's like the love child of John A. Davison and Dembski.

Lee

In answer to your questions:

1: Absolutely! No control = worthless experiment. And yes, perfectly possible to de-repress an erv.

2: Depends on how much lysate was loaded and/or whether a supersignal detection agent was used. But yes 10 secs is about right for a WB of 293T cells transfected with an MLV Gag-Pol plasmid....D'oh, inadvertently starting another conspiracy theory!!!

Joking aside, if the "original" WB is to believed, I think we have an open-and-shut case. Nice one ERV! 2 years of good scientists showing why XMRV/CFS cannot possibly be true and it looks like it might have been made up from the start. Any patients out there who are disgusted by this please take legal action against the whole sorry bunch of f---kers in Nevada.

That wasn't my comment. It came from a response to explanations written here and re-posted on X Rx, and is representative of the current rationale amongst some patients with regard to continuing in this line of research.

It was a relief to read the comments posted above, which sound like reasonable science rather than desperate grasping at straws.

However, there are several dozen studies in the literature that show various negative physiological effects of exercise (e.g. increased oxidative stress and inflammation, decreased cerebral oxygenation, lowered mitochondrial ATP) in CFS, and Wessely's argument that the disease has anything to do with "deconditioning" has now been rejected by virtually all researchers and doctors who are familiar with the disease.

Insofar as people can exercise without experiencing negative effects afterwards, it's a good thing for anybody. The idea that it's any sort of a treatment for the disease itself is no longer considered to be in any way consistent with the evidence though.

@330, ,Jason:

"at least one poster there, v99, that seems to believe that that gel artifacts are perfectly reproducible"

Yep. And V99 continues to claim this, even after being shown that even the same sample run in different wells on the same damn gel, look different.

Those fora are saddening: Lots of people wanting something, anything, that will help them, and a few people broadcasting teh batshit-crazy in an attempt to be seen as credible authorities - and the few people actually discussing the reality, getting shouted down.

At mecfsforums, someone calling himself "Virology Prof" has been offering some good fact-based measured conservative analysis of the issues with the gel(s), in the same thread where V99 is pretending to be an expert. The response to VirologyProf is this:

---------------
Dear 'virology professor' for you to be taken seriously as a professional and not a fraud posing as professor in virology please confirm you are actually who you say you are by providing the following details by private message to the moderator 'Wildaisy' or 'Since':

We will require your:

Full name
Location of current teaching position and past
University contact address and phone number of the department where you teach
University Email contact
Degree/Doctorate and other qualifications and where these were obtained and in which year. (We can then check with the university to confirm the legitimacy of your claim).

If this cannot be done, (there is no reason why a professor in virology seeking to educate others on virology, would need to be anonymous) it is best you
delete your forum account.
----------

Would those who believe that the disease is due to psychological causes be willing to take at least a cursory look at the following literature review?

It lists short summaries of more than 600 peer-reviewed medical articles showing a wide range of physiological abnormalities in the disease.

Is it really scientifically plausible that depression or somatization might cause all these issues so consistently across patients?

www.tinyurl.com/CFS-medical-abnormalities

Lee, in answer to your questions, yes, a 5-aza treatment of normal controls would be needed for the reason you suggested. The ten second exposure is not unusual with modern non radioactive based detection methods which generate light rather than use isotopes to expose the film.

@Faye

Hi Faye, I am a molecular biologist and have published a few papers on XMRV. To answer your questions,
1. Yes you can routinely activate ERV's in mouse cells will all kinds of drugs, 5-Aza, Hydrocortizone, etc. Dusty Miller published a paper showing the reactivation of an ERV in MDTF cells.

2. Yes 10sec exposure is short and would imply a strong signal but the wash conditions of the blot look stringent enough for my take. There is very little background banding that is of equal intensity of the control bands.

Hope this helps.

Yeti, it seems like (some forms of) CFSs are the result of a post-infectional hyperactive immune response. Also the hypothesis that a viral agent is the cause, is still and sensibly so taken serously, as Ian Lipkins' lab is now screening CFS patients for unknown pathogenous viruses.
And don't insult patients.

Ramon-- Does that look like an expected "XMRV Gag" blot?

In retrospect, that looks *nothing* like a Gag blot, ie HIV-1 p55, p41, p25, p24.

But I dunno what MLV does.

?

I wondered the same question about gag.
According to the new (i.e the original blot) the antibody used was against reverse transcriptase. Does anyone know the size we should expect for this protein compared to gag?

ERV. The banding patterns of Gag precursors can have different intensities in different cell types. Sometimes you don't see all the precursor bands at all. Depends on the antibody.

...but the again this is you-know-who we're talking about.

At least, it should be easier to detect RT of human ERVs than their GAG in this assay with cross-reactive anti-XMRV, because replication competent ERVs are evolutionarily constrained to keep RT, moreso than GAG ;-)

Where was Yeti insulting patients?

The jury is still out on CFS. It may or may not be an infectious or post-infectious condtion. It may or may not be a psychiatric illness.

But, as the decades have passed, dozens of infectious agents have been proposed as a cause, but none have panned out. And so far, the only treatment that has shown to be of (modest) benefit is cognitive behavioral therapy and graded exercise.

That does not mean that the case is closed by any means. And I think that further research to look for infectious causes is very definitely still warranted. But, I think that most disinterested observers would have to conclude that the needle is pointing more towards a psychiatric etiology than an infectious one.

Mo,
How insulting is it to suggest that mental illness is something to be ashamed of? I've already said its as real as any other illness. In fact, I'll even suggest that this sort of bias is the single greatest inequality in our society today.

If CFS is viral in nature then prove. Which is what I'm kind of assuming this whole XMRV debacle is about.

@ Ramon:

I'm not sure what you're referring to here, and I feel sure that few other patients will know either.

"Yes 10sec exposure is short and would imply a strong signal but the wash conditions of the blot look stringent enough for my take. There is very little background banding that is of equal intensity of the control bands."

Would you thus please elaborate a bit? Thanks for your help.

Joe and Yeti,

Did you look at the medical literature review I provided? If not, would you consider doing so?

I agree that the etiology of the disease does not appear to suggest that a contagious virus or other pathogen is causal (or at least the sole cause).

But physiological diseases can have other causes besides contagious pathogens.

Cordially,

Lisa Petrison, Ph.D.

lisapetrison at yahoo

I'm a recovered patient and I'm not insulted by Yeti. The research seems to show that psychological factors and/or viral triggers are involved, and stress seems to be a factor. Some kind of dysfunction in the stress system seems to be involved. Based on this, it's no surprise that CBT and GET are somewhat effective.

I think the main problem with CFS is that some people have this outdated notion that mind and body are completely separate, which is of course nonsensical. Also there is a huge stigma against psychiatric illness.

When Mikovits admits it's the same membrane with 2 different labels while explaining why it happened, I predict V99 will be doing A LOT of tap-dancing.

v99 is not well and I don't mean CFS. There is no point in getting into it with v99. Best guess is there are 1,000,000 in the US with CFS (don't know UK numbrs) and only a handful of people with a bad case of crazy on that forum. So, there are about 999,988 CFS patients in the US facepalming. I know because I'm one of them.

Anon at 12:36

I'm a mostly recovered patient who spent years curled in a ball in a dark quiet room with classic International Consensus Criteria ME/CFS.

I did not get better through exercise therapy or psychological factors, or in any random way. If you got better through psychological interventions, then I would suggest that your disease is rooted in something other than what classic CFS patients have.

Did you read the link I posted above? If not, would you consider doing so?

Thanks for your openness to the scientific evidence about this disease.

Cordially,

Lisa Petrison, Ph.D.

lisapetrison at yahoo

The mecfs forums crankfest just went full lockdown - the whole forum is now requires a login and password just to view. Ha ha.

ahh shucks..the militants seem to have blocked me from their forum...

probably a good thing...obviously people can loose their sanity...

let me know if anything good happens!

@mary

It actually seems that they've blocked anyone who's not a member. They did this earlier too, until they realized that it's hard to attract new 'recruits' when you're blocking everyting that is supposed to interest new people.

Now that they've relaized that it is just as hard attracting patients when it is obvious that your key posters are certifiable insane, they seem to have decided to go back to the good old days.

mary were you posting or just lurking? I was just lurking.

Lisa,

At work they block tinyurl addresses and even at home I usually avoid them because they often lead to downloads of malware. So, I cannot comment on your link. But, I will point out that there are many studies that show altered physiology, including pertubations of the immune system, in patients with depression. So the fact that there are physical findings does not exclude a psychiatric etiology.

For example, it has long been know that there are changes in the serotonin receptors of platelets in the peripheral blood of patients with depression.

http://www.sciencedirect.com/science/article/pii/000632239090576N

And there have been many, many studies over the showing changes in the immune system in depression, including this recent one:

http://www.ncbi.nlm.nih.gov/pubmed/21945535

So, the ability to find possible physiologic differences between cases and controls does not exclude a psychiatric etiology for a given condition.

I would say it was a hard lesson they have learned, but it wasn't like you really had to know your stuff to get this.

These two pictures are the same.

Here is one on this blog (not some anti CFS thing BTW).

Here is the other in Science, for god's sake.

Anbody can get them and look at them.

It galls them that it came from someone they dont like, and I can see that, but admission and humility would have won the day.

Thanks RRM..MattK, I was just lurking..i figured my IP popping up 1000 times a day triggered a lurker alert!

well, I did admit I was like a deer caught in the headlights with them...the pathology just oozes out of some of them...

That is a good compilation of research, but you really need to read the original papers, the compilation doesn't have enough data in it.

There is no non-material mind. There is only the brain, and everything the brain does or doesn't do is only a consequence of physiology and physiology is only mediated via chemistry and physics.

It is a complete false dichotomy to label things as psychological or physiological. There is only physiology.

Lisa: I think you have just shown your closed mind by assuming I couldn't have had classic CFS (I did, in fact). Also, the fact that you believe that your depression can be triggered by the mold on people's clothes - and that you can detect this mold - doesn't really fill me with confidence. (At least, that is Erik Johnston's theory, but you apparently subscribe to it, according to your public posts).

PS, I did look at your document. However just because there are biological factors does not mean it is organic. Depression is biological.

And, just so that no one is confused, Lisa's Phd is in Marketing, not in any science.

By Not Fooled (not verified) on 04 Oct 2011 #permalink

Lisa, this is a blog about retroviruses. You have a PhD in marketing.

Joe @357 - Valid point.

The irony though is that while many millions of pounds have gone into, and will go into researching the physical causes of psychiatric diseases, with the result that some medications are available that at least help with the symptoms, there is less enthusiasm for this for CFS since it is assumed to be largley somatoform, i.e self created.

Thats the origin of the stigma, not that that people reckon it is a psychiatric condition per se.

I think people would be OK if it got at least the same respect scentifically (the public is another matter) as schizophrenia, or depression, but it does not. Its considered by some as some kind of O.C.D, curable by lifestyle changes, and while the jury is out - people are allowed to postulate this of course - though anyone who has sean enough presentations soon changes their mind.

Most people I know with CFS have a deep empathy with mental health patients, If they have any fear of being labled as such, its fear of therefore being as treated as badly both by society and quacks - not because of any holier than though thing.

What CFS does have in common with psychiatric diseases is as yet unkown definate causes - so at the minute its anything goes in quackland. As we have just seen.

@350, Erk:
"When Mikovits admits it's the same membrane with 2 different labels..."

3 different labels. Assuming the new one is real, wit the actual laboratory labels, she's going to have a very, very hard time coming up with any credible explanation.

I so gratified to see that this is all public now. It's a nice present to wake up to see the bravery and intellect of so many people finally paying off.

Also, watching the kook community shit bricks (as I said - shit was about to get crazy) is, well, almost worth the whole thing*.

*if real people weren't being hurt and suffering, this would be a really good prank joke.

I'm not making any attempt to hide information about my background. If I were, I wouldn't have given my full name. My Ph.D. coursework consisted of a mix of economics, statistics and anthropology, and my concentration was in social psychology.

If this were a forum where people were only discussing retroviruses, I certainly would not have contributed. However, at least half of the recent comments were about whether CFS is psychological vs. physiological. No one else was chastised for discussing that, and my comment was brief enough that it didn't take up much space.

The abnormalities in CFS go far beyond immunological ones. Here is the longer link.

https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7A3…

Starting on P. 46 is a group of papers discussing the theory that depression may be the result of the inflammation characteristic of CFS rather than a cause of the disease. Since toxic mold is a very inflammatory substance, the idea that mold exposures might cause depression is a wholly reasonable one that is grounded in the literature.

For those who would like to see longer abstracts or access full articles, the PMID's are included in the summary.

The main complaint that people on this forum have about CFS sufferers is that they aren't listening to the scientific evidence about whether XMRV is a real virus rather than a contaminant.

Thus, it only seems fair that people here make an effort to attend to the scientific evidence before making a conclusion about whether CFS has a psychological vs. physical basis.

I do appreciate the argument that funding for CFS should go into research that actually has the potential of finding a cause of the disease. However, in light of what we know about the disease, spending it on research into psychological causes makes no more sense than spending it studying XMRV.

if this illness is really somatoform, then i have a business idea: somebody should link up with some patients and try to figure out how exactly they created their biomarkers (high titers to multiple viruses and bacteria, overactive and underactive immune system, brain lesions, low cardia output, borderline heart/organ failure, etc.). once the mechanism is understood of how patients have created all these abnormalities, it can be marketed to people who are sick of working and want to go on disability while only feeling the way that most americans feels anyway: a bit tired. it shouldn't be too hard to copy this since btw. 1 and 4 million in the US (current CDC estimate) have managed to do it even without any coaching. the business plan would be to get a cut from the disability payments.

LOL, even the famed Dr. Deckoff-Jones lost patience with "Dr" Lisa.

http://treatingxmrv.blogspot.com/2011/10/square-one.html

Jamie Deckoff-Jones MD said...
Lisa,

This is crazy. It is all in your head. Nobody is denying that biotoxins are a trigger for many. How many times do I have to say it? You make many intelligent contributions in your comments, but this idea you have that everyone is against you, or doesn't see what you see, is simply incorrect. Everyone is sick of it. I share everything!

We have big problems as a community. We need to come together. Take your divisiveness somewhere else, please. Come back when you have something to contribute other than Dr. Jamie and Dr. Judy don't get it. WE GET IT...

And btw, where is Erik? I'm starting to worry about him.

Jamie

By Not Fooled (not verified) on 04 Oct 2011 #permalink

Anon:

Upon reflection, I agree with you. It was closed-minded of me to discard the idea that you might have recovered from classic ICC ME as a result of addressing psychological factors.

I am currently working with Dr. Keith Berndtson, M.D., on a project interviewing people who have mostly or fully recovered from severe, long-term ME. Our hope is that by looking at these people's stories, we will generate testable hypotheses about factors that may be responsible for the disease and/or treatments that may help to address it.

I thus would like to find out more about your story through a telephone interview. If you are willing to share, please contact me and hopefully we can set up a time.

Thank you for your consideration.

Cordially,

Lisa (lisapetrison at yahoo)

"if this illness is really somatoform, then i have a business idea..."

JKB is confusing the term somatoform with malingering.

Just because a condition is psychiatric does not mean that the patient is "making it up," or that there are no physical changes nor does it mean that it is not a very real condition worthy of research and treatment.

There are any conditions for which the cause is not yet known. Should we spent the bulk of research dollars available for autism, Parkinson's, ALS, cancer and Alzheimer's on psychological research too? If not, what makes them different than CFS?

@Joe - JKB was being sarcastic and the point was the opposite of how you interpretted it.

That is an accurate quote from JDJ. Especially in light of her "I don't care about science and will think what I want to think" comment from today's blog (below), t will be interesting to see whether folks here think her attacking me makes me more or less credible and/or sympathetic. :)

>I am not a lab scientist and cannot evaluate the slides written about in yesterday's Chicago Tribune. I refuse to read ERV's blog on general principles.

Actually, much about the pathophysiology for many cancers, Parkinson's, ALS and Alzheimers is pretty well-characterized.

And, autism is a psychiatric condition, so your inclusion of autism does not make sense.

Perhaps you should stick to marketing.

By Not Fooled (not verified) on 04 Oct 2011 #permalink

Much about the pathophysiology of CFS is pretty well-characterized as well. Again, look at the medical review. A great deal is understood about _what_ is wrong in CFS -- we just don't know _why_ it is wrong.

Autism is a developmental disorder, not a psychiatric one. If you have recent peer-reviewed papers suggesting otherwise, please provide the cites.

I've shared my own real name and background. Not Fooled, would you care to share yours?

I'm sorry, but did Judy Mikovitz already lose? Oh, that's right. The investigation isn't even over yet. In fact, it's only two days in. Does being fired after two days count as a loss? Is that what you're saying? Because if you're saying that I can assure you that you're wrong. Why would you make this topic when the investigation is still on? Judy Mikovitz is still researching right now and she has been the best researcher in the WPI for how many years now? She's dealing with one of the worst grad students in academia who just happens to have found an anomaly because she's feeding off the energy of studying in Oklahoma. But you know what? She still fucking sucks. Judy Mikovitz is one of the best fucking scientists in the world, she has 40 peer-reviewed publications in her career and would of won the Nobel if the committee wasn't biased. Maybe you should shut the fuck up before you make retarded topics like this. You know why? Because you're going to be embarrassed when Judy Mikovitz wins and someone bumps this topic. Oh look at that, the Abbie Smith just doctored the images when she needed to make an accusation stick, just like all of Judy's critics did. Are you a fucking drunk? Are you retarded? Are you autistic? You are a fucking idiot and you should never make a topic on this board again and I'm fucking serious. I almost have a feeling you're the only guy making all these anti-Judy Mikovitz topics because you're a faggot hater who doesn't like the scientist because she's good. Fuck you, be good at something in YOUR life and then maybe try to troll these fucking scientists on the board, like I give a fuck. It's so easy to spot out your threads now, you're a retard. Always doing stupid shit like this. Why don't you try to be a good poster? Just for once? For once in your fucking life try not to make a topic like this. That's just you, you're always right at getting it wrong. Fuck you. You are nothing.

@371
people who subscribe to the illness being somatoform suggest that it's caused by a false illness belief, i.e., self-created.

erv, I think you broke Tyler's brain.

@377 - way to get people to jump over to your just started blog....

Someone is mad. Really mad.

Q: When the little boy pointed out the Emperor had no clothes what % of the crowd said "He's just a little boy who doesn't know anything about the Emperor's fine threads"?

Just wondering, cause I forget how the story ended.

Lisa Petrison: what was your email address again? We didn't quite catch it. You wouldn't be interested in marketing anything, I suppose? Surely not, in light of the seriousness of the subject matter.

By Anonymous (not verified) on 04 Oct 2011 #permalink

I have not made one penny on anything related to CFS and do not anticipate ever doing so in my life.

I've spent a great deal of time during the process of my recovery developing materials on the disease, such as the literature review mentioned above, because I felt it was something I could do that had meaning.

I was very very sick and feel lucky to have regained my life. My hope is that one way or another, others with this disease will be able to regain their lives too.

TylerD. Such a lovely rant. Who is Judy Mikovitz -- I believe we are discussing the slides of Judy Mikovits here. Charming -- did V99 goad you into this?

Talking about the arrogant ignorance known as V99. Seems she thinks the recently posted third slide is the result of photoshop. Mainly because one pixel is out of place along the top edge of the label. Stupid twat doesn't realize that if the label was photoshopped on, then all the pixels along the edge would be different. She is soooooooo monumentally stupid, it beggers belief. I am actually beginning to think she is delusional.

By Anonymouse (not verified) on 04 Oct 2011 #permalink

V99 had three completely different arguments as the story unfolded:

1. The title doesn't apply to the image at the bottom, only the one at the top

2. The images are not the same

3. The conditions are the same so of course they look the same

He/she is a complete dickhead who knows jack shit about science. Thank god their dingbat forum has been locked as at least it means no more unsuspecting patients will stumble across their vicious ignorance.

By frozenwarnings (not verified) on 04 Oct 2011 #permalink

It is always a little awkward to read comments by CFS patients on the science. They too often latch onto irrelevancies and get lost in the weeds while straining to make the data to fit their preconvictions.

Science requires detachment, objectivity and a healthy amount of skepticism. (And erv is a born skeptic and a born scientist, I say).

So, while I know that it sounds supremely patronizing to point this out, I have to say that--as passionately as CFS patients may feel about the cause or treatment of their condition--they are, by definition, in no position to analyze the science objectively.

And this does not mean that I think that they are foolish or simple minded. It is just part of the human condition. We cannot help our biases and must always control for them. That is why in medicine we do double-blinded placebo-controlled trials. We do not blind the study to the patients because we think that they are weak-minded or are liars, and we do not blind the investigators because we think that they are feckless or that they are charlatans. We do this because we know that both are human.

Is that really TylerD? Given that TylerD has been posting pro-ERV comments as recently as yesterday? Like three days after this post was put up?

O.o

>So, while I know that it sounds supremely patronizing to point this out, I have to say that--as passionately as CFS patients may feel about the cause or treatment of their condition--they are, by definition, in no position to analyze the science objectively.

Joe, yes, I agree. That's why I put so much effort into developing the literature review--so that people would be able to evaluate the objective evidence.

Now that you have the longer link, have you had time to take a look at it?

erv, I think you broke Tyler's brain.

It is a sign of progress that someone has moved on from Denial to the Anger stage. Next, Bargaining!

If the response to Brian Deer's work on Wakefield's chicanery is any guide, a lot of people are going to be saying "ERV never had legitimate access to Mikovits' slides so therefore Oh look something shiny".

By herr doktor bimler (not verified) on 04 Oct 2011 #permalink

@OWE, From Deckoff-Jones at your link:

And maybe ERV and her ilk.

Why won't they leave Abbie's ilk alone?

I initially thought TylerD's attempted Poe was quite lame. But apparently his post reminds us of the true meaning of Poe.

It isn't just CFS patients, it is everyone. Not being objective is part of the human condition. It is extremely difficult to be objective.

It is true that some people can be objective more easily than others. That is one of the benefits of being on the autism spectrum, it helps you to take stuff literally, which in science is a good thing.

That is why in science it is so important to show your work so other people can check what you are doing because anyone can make a mistake.

Real scientists want to actually be right. Pseudoscientists want people to think they are right. Those two things are not the same. Real scientists acknowledge their mistakes and retract papers with mistaken data. Pseudoscientists put up smoke and mirrors.

@Owe

Unbelievable, as the motive for Mikovits not sharing her data with Science, was apparently that she didn't want a "spitting match" and didn't want to 'throw the Cleveland Clinic under the bus'.

@frozenwarnings

Although I agree with the the idea that the decision to lock the forums is great for the human race as a whole, is it bad to still feel a little bit sad personally?

the true meaning of Poe.

Dammit!

Bitches don't know bout my Chargers copypasta.

erv has become a very hot topic of conversation on the CFS forums and Deckoff-Jones' blog, etc.

It certainly has attracted some woo to the comments section here today.

By Woo Patrol (not verified) on 04 Oct 2011 #permalink

@RRM

Although I agree with the the idea that the decision to lock the forums is great for the human race as a whole, is it bad to still feel a little bit sad personally?

It is very bad, every time someone looks at that forum the Home Secretary deports a cat*

*British political satire

By frozenwarnings (not verified) on 04 Oct 2011 #permalink

Spence:

I got the impression he was re-posting some comment from the CFS forum and botched it, maybe.

Herr doktor bimler:

Actually, that's exactly what they were arguing just before they locked the forum. V99 and a few others decided that Abbie and others who presented copies of the original blot images had stolen them somehow.

Remember that V99 insisted that Abbie doctored the re-sized, re-colored images to make them look identical (while simultaneously insisting they should look the same!) The theft claim appears to be based on V99 interpreting "here are the original images" to mean "here are the original files hacked from WPI/Mikovits' PCs, or something similarly sinister, rather than from the (ahem) published article and distributed PowerPoint. I can understand V99 flibbertigibbeting their way into that conclusion, but I'm still a bit taken aback at the community's support of it. Several commenters provided links to or descriptions of how to find those files, in the same thread!

Locked down and long lost the plot.
Wildaisy, The Admin/Founder of the the Messedupforums, has accused Gerwyn of running off with Mrs Whittemore - and the two of them are apparantly - AT THIS MINUTE - plotting to steal Judy Mikovits' grant money.
...A few of the more reasonable members might have called a moderator on Wildaisy. Only - ALL the moderators have quit.

Fuck. Almost choking at ERV's post, and then comes Jules...

Do you people want to have me killed?

From that Science article;

"Mikovits's collaborator, Francis Ruscetti of the National Cancer Institute (NCI) in Frederick, Maryland, who ran all of the Western blots, confirms that the Ottawa slide uses the same image that appears in Lombardi et al. Ruscetti and Mikovits"

Oh noes....I can't even begin to imagine the sheer amount of cognitive dissonance....V99...feel almost sorry....

[PS: Sorry for the post-combo]

lol.

And congrats ERV.

By mo (one of Abb… (not verified) on 04 Oct 2011 #permalink

V99 and a few others decided that Abbie and others who presented copies of the original blot images had stolen them somehow.

Hunting around, I see that every forum or blog where someone is currently accusing ERV of acquiring the blot images surreptitiously, had not so long previously hosted a copy of the Ottawa PPT. Without exception.

But a couple of commenters have moved on to the argument that "Maybe Dr Mikovits is not psychologically perfect but nor is anyone else. This is the Bargaining stage, I think. Progress!

By herr doktor bimler (not verified) on 04 Oct 2011 #permalink

"" In a 1 October written response to Whittemore, Mikovits contended that it was "completely appropriate" for her, as research director, not to give Lombardi the cell line. The cell line was not related to studies of the gammaretroviruses, but Lombardi wanted to use it for experiments connected to a grant Mikovits had secured from the U.S. National Institutes of Health to study possible causes of CFS. Mikovits contended that Lombardi "was unwilling to take my direction" and should not be undertaking a new project "while neglecting his other duties." She also questioned his ability to carry out that experiment. ""

maybe he wanted to falsify her pet theory of XMRV/HGRV infection?....

By mo (one of Abb… (not verified) on 04 Oct 2011 #permalink

Thats the really really weird part (@406) - everyone could do the 'trick' straight away themselves since the Science paper (downloaded two years ago) was surely somewere on the same computers they where using to look at the Ottawa PPT.

"As far as the use of 5-Azacytidine, Ruscetti and Mikovits stressed in their e-mail that "there was no attempt in the original paper to hide anything." They say for the purposes of Lombardi et al., the use of 5-Azacytidine was not germane: They were simply trying to demonstrate that CFS patients had viral proteins not seen in controls."
Game, set and match.

"The very next day, a graduate student who writes a snarky blog that has been highly critical of Mikovits and the XMRV theory raised questions about whether a figure in Lombardi et al. had been misrepresented."

Now wait just a minute. This is a SNARKY blog? Why, if had known that...

This blog needs a function to "like" the comments :-)
I think the tread is done, Lombardi et al. BUSTED!

By mo (one of Abb… (not verified) on 04 Oct 2011 #permalink

Bit odd of Dr DJ to give out Judy Mikovitz's email to everyone, huh?

By One of erv's ilk (not verified) on 04 Oct 2011 #permalink

Question remains, why did Science further investigate this and not elevator-gate?

I just spewed juice all over my monitor. Goddammit RRM. Goddammit.

Joe, criticizing authors of Science papers in lolspeak and busting their figures with magic tricks isn't exactly what the more established guys would consider polite - though most of them probably approve :D

By mo (one of Abb… (not verified) on 04 Oct 2011 #permalink

@ 409 Yep. Thats it. It had crossed others minds I am sure that this was a possible reason, I'm not confident enough here to have suggested that maybe they had in fact used 5 Aza- in the original paper, and that was the coverup. Thats her 'thing' though isn't it - 5-Azacytidine? I dont know enough about her past work.

Ummm, I was just being a bit snarky myself.

I was going to add an emoticon to signal that I was joking, but emoticons just kind of make you lose snark points.

Don't change a thing Abbie. You're wonderful!

Lawl@415.

There is a simple, elegant explanation, RRM: Science knows when it can't compete with Yours Truly on getting to the truth of the matter. Justicar Labs, LLC, is second to none in pioneering the field of Watsonian research, and rapid onset, immediate remission of prosopagnosia with direct EG exposure.

Yeah Joe, I thought so. But aside from Science calling ERV snarky, overall the part about her gives a positive vibe.

David, I think she worked on epigenetics of HIV proviruses before XMRV, but im not sure.

By mo (one of Abb… (not verified) on 04 Oct 2011 #permalink

Yeh, yeh, yeh. 5AZA or no 5AZA, who cares. The biggest news of the day -- the V99 forum has moderators? Who knew?

By wanna b ilk (not verified) on 04 Oct 2011 #permalink

'Snarky' is probably understating it - erv got off lightly, IMO. Not that I don't like it.

Yep, the real dissapointment in this rolling news has been missing out on certain peoples replies, which - by hiding basically puts them at the bottom of the heap.

The biggest news of the day -- the V99 forum has moderators? Who knew?

Maybe V99 told them that she knows where they live?

Sigmund @409: so that's why they were so confident that other labs hadn't used their exact protocol, LOL

Mikovits: "Harharhar, u all want to replicate my thang, but u r too stoopid to read my mind and know that I added a little something highly demethylating reagent!!!11!"

By mo (one of Abb… (not verified) on 04 Oct 2011 #permalink

Well, and erv also recently pointed out that Dr. Judy may have also used another "secret ingredient"

http://scienceblogs.com/erv/2011/09/xmrv_and_chronic_fatigue_syndr_28.p…

"But thats not what Silverman found.

He didnt find mouse ERVs.

He didnt find the same exogenous viral sequence over and over.

He didnt find the same XMRV provirus in every sample because of contaminating cell line DNA.

He unquestionably found VP62 plasmid in the samples he got from the WPI... and only in the CFS patient samples.

Meanwhile, at the WPI, they say they get FANTASTIC results with their assays. The 67% positive rate flew up to, what, 100% after the Science publication...

And yet, when WPI/Mikovits are given samples where they do not know beforehand who is 'supposed' to be positive and who is 'supposed' to be negative, they cannot differentiate between CFS/Healthy/Positive controls. 50:50, implying that half of the people they say are positive are really negative, and half of the people they say or negative are positive, or in other words, they have no idea what they are doing.

When samples are collected from 'XMRV positive' patients without any 'processing' at the WPI, the samples come up negative.

And yet the CFS samples shipped to Bob Silverman in 2009 were contaminated with XMRV PLASMID before his lab touched them, after WPI touched them, after Silverman gave them the VP62 plasmid.

Isnt that weird?"

hey..if mo can be one..so can I, but err..mo wants to be Abbie's elk...I'll stick to ilk...

and here I was, worried that after the BWG study was published, we'd have nothing to talk about...silly me!

got any more magic tricks?

By mary (another … (not verified) on 04 Oct 2011 #permalink

Reading that sciencemag story, on the 22nd of September, Mikovits et al. published a defence of the validity of their finding of xmrv in patient samples. But by the 23rd of September, "they realized that this experiment did not in fact show XMRV but proteins from a broader family of gammaretroviruses" and so used different labels for the Ottawa talk.

Either something changed in a day or few (allowing for publication time) or I'm missing something.

By Pipsqueak (not verified) on 04 Oct 2011 #permalink

yeah, spiking samples meant for PCR analysis with VP62, treating cultures meant for westerns with 5-AZA - that's some mighty good unbiased science right there.
While we'll probably never prove that the former was done intentionally, Ruscetti confessed to the latter. Sooo... forced retraction?

Elk are better than regular ilk, it's becoming autumn and I like me some antlers ^^
Sad that elk in American English doesn't mean moose like in Europe (German Elch = Moose), they are even more badass.
Now I'm gonna sleep, good night.

By mo (one of Abb… (not verified) on 04 Oct 2011 #permalink

Let's see,

Abbie OWNED Behe
OWNED Mikovits

Who's Next?

I believe you mean PWND.

I'm not so sure about not proving the spiking, mo. I'd bet money there's going to be a real investigation now. Since Mikovits was demonstrably unable to differentiate positive and negative patients when blinded, they'll be looking hard at the records from when she was unblinded and could.

But regarding this 5-aza revelation, lemme see if I've got this right: Mikovits whacked CFS patient cells with something that makes all cells give off lots of weird viruses, didn't whack normal cells, said "see, patients have weird viruses!", but accidentally REALLY said "see, patients have XMRV!", and is now back to saying "weird viruses!"?

@ MattK

"The biggest news of the day -- the V99 forum has moderators? Who knew?"

All the moderators on that forum have quit within the last week, so it must have been the administrators who closed the forum to nonmembers. Wonder how many members they will have by this time next week, if the forum even exists at that time. Ironic, ain't it?

By Laurie B. (not verified) on 04 Oct 2011 #permalink

Laurie B, *really?*. That's hillarious, I'd thought that was a joke. Sadly, I can't take credit for wanna b ilk's awesome line though, I was just quoting that.

Okay, someone has to make up some t-shirt that say "got ilk?"

By Yakivegas (not verified) on 04 Oct 2011 #permalink

Annette Whittemore speaks on Jamie Deckoff-Jones' blog.

@Lisa,
Thank for the reference. I'll always read scientific references if provided. The 'nutrients' section is especially interesting.

According to this reference, CFS has been associated with decreased levels of the following nutrients:

Coenzyme Q10
Vitamin D
B vitamins
Folic acid

Now get ready to have you mind blown...

Maybe its poor nutrition that's causing these low levels and the ensuing depression/fatigue vs. the other way around?

The issue here is that the human physiology absolutely requires a certain base level of nutrition and activity to function properly. Beyond that, if the most successful treatment is CBT/GET then for most people CFS is a psychiatric/lifestyle issue. The End.

Patients that are blowing smoke and the quacks that are enabling them are only keeping people sick.

And to be clear, I'm perfectly aware that if you are literally totally out of shape; exercising is difficult. Not only difficult, but painful and with long recovery times. There is no free lunch and the if you want to get better you are simply going to have to work for it.

Calling mansplainer. Come in. Do you copy? over.

Abbie,

Now that Ruscetti has confirmed that the gels are the same and not from different experiments, I would hope that some of your harsher, name-calling critics would have the decency to offer an apology.

P.S. I'm not gonna hold my breath on that one.

You are may or may not be right about be more intelligent than the average person, but that doesn't excuse you for being such an arrogant prick.

By Katherine Issy (not verified) on 04 Oct 2011 #permalink

Yeti, that's interesting about the nutrition. This is a really new line of thought, but some researchers say that part of the problem in CFS (and autism) is due to difficulties in converting folic acid to activated folate, thus inhibiting methylation (meaning that toxins accumulate and various systemic processes function suboptimally). Some other nutrients that are issues in CFS seem related to detoxification as well.

So that would be a good area for further exploration. It certainly would be nice if people could avoid getting CFS just by taking Metafolin (an activated folate) and some other nutrients! Sounds awfully good to be true though. And certainly, supplementation in people who already have CFS rarely results in any substantial gains.

I've spent a great deal of time talking to a variety of people (CFS doctors/researchers, research methodologists) about the PACE study, which evaluated CBT/GET. A summary of various criticisms is at the following link.

https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7A3…

I would argue that there are enough problems with this study to make it almost entirely worthless. As in retrovirology, sometimes things get published by mistake. Obviously, though, you can decide for yourself what you think.

These comments have been hilarious.

MattK @440 - Fixing your link here (read if you want to barf). The comment you actually linked to was funny though.

By Smurfette (not verified) on 04 Oct 2011 #permalink

Lisa, the problem with 'nutrition' is that it is a quack playground.

No one understands metabolism, so its easy to bamboozle people into thinking that an inability to utilise some chemical - THAT IS VITAL FOR LIFE LET ALONE FEELING A1 - is the problem.

An adequate rich western diet is more than adequate. Conditions which stop people carrying out the basic chemical reactions necessary for life, are known, easily identified and understood and have names, yet are never mentioned by supplement sellers because they know that not getting enough of something is rare, and that this is not the same as not being able to utilise a nutrient - which cant be solved by eating lots of it!

Yeti, the PACE trial ended up using, as it's positive outcome, a score which was a) 5 points lower than the trial's entry criteria, b) a score which was 15 points lower than the score necessary for a result to be classed as a 'positive outcome' according to the published trial protocol, and c) a score which was 10 points lower than a score deemed by PACE's own Trial Steering Committee as being 'trivial'.

Therefore the exact same result which was claimed as indicating that patients had 'recovered' according to the accompanying Commentary in the Lancet and in the media at large and that patients had 'gotten back to normal' by the study's authors was a) not even necessary for any improvement to be reported, b) would not have qualified as a positive outcome according to the trial protocol, and c) was less than trivial according to language used by the Trial Steering Committee. This does not even go into other problems with PACE, such as the fact that the patients 6 minute walk test averages were comparable to those of patients with COPD, chronic heart failure, etc., as well as the CBT groups' mean scores actually being the same as the control groups' scores.

So please educate yourself on the topic before regurgitating yet again that the 'success' of CBT/GET indicates that ME/CFS is a psychiatric/behavorial disorder, since the 'success' of CBT/GET in ME/CFS relies more on the same kind of magic ERV exposed on this blog post than it does with any kind of rational occurance.

Someone asked what Judy did before she went to WPI. I know! She worked for a biotech company in Southern California that went bankrupt. After that she because a distributor for a vitamin company called Pharmanex in 2006. If you look at this link, you can see her pictured as a new executive. www.bigplanetusa.com/library/NSE/pdf/celebrate_1005_accolades.pdf She led a cancer support group, called herself "Dr Judy" and sold the patients vitamins that she told them would help them beat cancer. WPI hired her away from her job as a vitamin saleswoman. no joke. I bought a lot of her vitamins. She kept a nice percentage of all sales. She was very empathetic then and passionate about her views that the vitamins could provide benefits to cancer patients.

By Former client … (not verified) on 04 Oct 2011 #permalink

If JM is dis-barred, does that mean that she will not be able to return to bar work?

By Michael Kingsf… (not verified) on 04 Oct 2011 #permalink

I don't know if you remember ERV but on the Bad Science forum a couple of moths ago someone asked you about the EM images of budding viruses from the Science paper. These seemed like strong evidence for gammaretrovirus infection. You replied that using de methylating agents might cause this. However, the use of demethylating agents wasn't mentioned in the material and methods ...........................

Apart from the original Lombardi et al. study, can someone explain to me what other scientific proof is out there that a gammaretrovirus (or even a retrovirus) could be causing or play a mayor part in a subset of ME/CFS patiënts?

Or is this idea really based just on Mikovits' findings? Which to me looks like a house of cards slowly falling apart.

They tried to make her go to retract.
But she said "No! No! No!"
Wait a second...
Aren't we just talking about a simple problem of reproducibility?
The ideal in science is to use separate experiments to produce the same result.
In the case of Mikovits, she used the same result to produce different experiments!

the EM images of budding viruses from the Science paper.

Even now, I suspect, people are scouring the literature looking for other copies of the same image.

By herr doktor bimler (not verified) on 05 Oct 2011 #permalink

My comment does not pertain to the Lombardi et al. paper bur rather your attitude Abbie Smith.

I question the reasoning behind the ad hominem attacks and language used by you. The greatest scientists are often humble and present the opposing viewpoints in the most generous manner whilst speaking very highly of those who have different viewpoints contradicting with their paradigm. In academia, lessons that one learns very quickly are to be polite, not to call people names and to act maturely.

Your main obstacle to becoming a scientist involves breaching some of the aforementioned etiquettes that are ubiquitous in academia. Breaching these ârulesâ detracts from the validity of the scientific arguments. For instance saying âJust so you know, I will publish stupid things you write me if I want to, no matter how many "THIS EMAIL IS ARE BE CONFIDENTIAL!!1!! I BE A DI LAWYERS!" you add to the bottom of your message.â The previous comment by you is just one of countless examples that breach the universal etiquette of academia. It can be argued that the purpose of medical scientists and researchers is to help people. The pain, suffering and hurtfulness that result from some of your comments and potential future comments may outweigh any benefits that you bring to mankind as a result of your future scientific work.

I believe that unless your attitude changes imminently, you will struggle to find a permanent place of long-term employment in the realm of virology. Prospective employers will shy away from an outspoken, rude and immature researcher and the internet will leave a permanent fingerprint of your disingenuous and ad hominem words. I believe your rude comments lack thought regarding posterity and what may attract a greater number of views to your blog in the short term may be your professional undoing in years to come.

Alan, thank you for letting us know that Abbie's tone invalidates her scientific argument.
By the way, you might want to read up on the term "ad hominem", as in: "the internet will leave a permanent fingerprint of your disingenuous and ad hominem words."

"An ad hominem (Latin: "to the man", "to the person"), short for argumentum ad hominem, is an attempt to negate the truth of a claim by pointing out a negative characteristic or belief of the person supporting it."

Dear Alan,

I am sorry to hear about your case of terminal stupidity.

Best wishes,
Reality

Dear Alan,

With the greatest respect, you're a moron

By frozenwarnings (not verified) on 05 Oct 2011 #permalink

Just HOW long does it take to retract a Science paper?

Alan you sound like Angela Kennedy 'ad hominem' this 'ad hominem' that... blah... blah... anything to distract from the point being advanced...

Next you'll be threatening Abbie with oh I don't know.... let's see... using her university computer to write her blog with such 'awful' language aimed at 'scientist's' or something equally cutting...

Can't imagine Angela will see her 'expose' of Abbie's language posted in Science somehow even as a comment...

If you aren't a member there 'Alan' you might want to check it out - you know the place I am sure.

Abbie - congratulations on the Science article - this 'error' might help focus their 'review' of Lombardi et al.

What the patients who had their BLOOD tested for XMRV must now be feeling I cannot imagine but WPI and Mikovits sure ain't helping them now.

Dear "Alan", or whomever your real identity might be:
I get the feeling that you have modelled your superior advice to Ms. Smith from the same hymnal as the other White-Knights of the blogosphere: Paul Myers, Greg Laden, Phil Plait, et cetera.
I get the distinct impression that you consider your own opinion on the matter of "tone" to be distinctly superior to that of this blog's author. That smacks of elitism, to my mind. That you choose to hide behind a pseudonym of a male, renders it even more ironic.
I was under the impression that Ms. Smith was an adult human being, and obviously capable of guiding her own path through life without the assistance of anonymous remarks from those who feel that your knowledge of her route is superior to hers.
How utterly condescending and, if not sexist at least elitist.
If you are not ashamed of your feeble contribution, then you are possibly less cogent than you assume.

By Michael Kingsf… (not verified) on 05 Oct 2011 #permalink

Dear Alan,

1. Ad hominem does not mean what you seem to think it means. Please educate yourself better.

2. Does your particular brand of McCarthyism come naturally, or did you learn it as part of your "academic etiquette" classes?

Yours Sincerely,

Spence.

Dear Alan

XMRV and CFS link was scientifically proven wrong before this exposure of "scientific misconduct" ahem nudge wink.

To promulgate a hypothesis based on shaky evidence and have it called into question is one thing. To have 2 fundamental parts of that data look suspiciously like the results fraud, and use it as the basis to extract hundreds (and in some cases thousands of dollars) from people who desperately want an answer to their condition is quite another.

Those are the actions of c**nts.

..and you can bet your ass that the "good guys" in Nevada will let JM carry the can for the whole shitfest while they laugh all the way to the fucking bank.

So what other word would you use to describe such behaviour? The Anglo-Saxon lexicon of terminology is perfectly apt on this one.

Oh dear Angela, busted.

By frozenwarnings (not verified) on 05 Oct 2011 #permalink

@ Ronnie #452

Science doesn't operate on a'proof' basis so there never has been any 'proof' of an involvement of any retrovirus in the disease processes of M.E/CFS. What was nominally tested by Lombardi et al was the hypothesis that XMRV was associated with M.E/CFS. This hypothesis was based on flimsy, even faulty reasoning, and while a limited association - say for example as coud have been demonstrated by a statistically relevant XMRV response in a minority of M.E/CFS patients - would have been interesting, the results in Lombardi et al, simply made no sense.

The Mikovits/WPI hypothesis was wholly unrelated to the characteristics of M.E/CFS which is an illness described only by broad symptoms and which has a reported gender differential which is far more characteristic of known autoimmune diseases than any infectious illness. Of course, as with HIV, gender differentials can, without adequate epidemiology, appear to have a gender preference - but although M.E/CFS has been poorly served by epidemiological research, there would still have to be some overweighted male correlate for the female overweighting in M.E/CFS, something which should be obvious within the overall health statistics of developed nations. This lack of match to the reported characteristics of the illness under investigation by Lombardi et al, should have been addressed prior to the research commencing. The fact that not only did this most basic intellectual dilligence was not applied atthe proposal stage, but was not addressed by the funders, nor by peer review of the eventual paperfor publication, places a question not only on Mikovits' scientific rectitude, but upon the management at WPI, on the funding body and upon Science Mag and its peer reviewers.

Scientists (as Abbie often reminds us) make mistakes and that is part of science - the issue in the sorry tale of XMRV and M.E/CFS is not that mistakes were made, but that at key stages intellectual dilligence was lacking on the part of a number of players. What needs to be made clear now is that all of those players understand how not to screw up in the same way again. Mikovits and the WPI have many questions to answer, but that shouldn't obscure the issue that science as a process, the societies that fund it, and (in this case) the patients whose particular needs were supposed to be served by it, was failed by more than one party.

I don't know if you remember ERV but on the Bad Science forum a couple of moths ago someone asked you about the EM images of budding viruses from the Science paper. These seemed like strong evidence for gammaretrovirus infection. You replied that using de methylating agents might cause this. However, the use of demethylating agents wasn't mentioned in the material and methods

Was the use of demethylating agents mentioned somewhere? I remember this post with Abbie's Brainstorm Challenge question about it and where I asked if ERV particles might be what they were finding in the WPI paper. But I just looked at the slides and transcript from the presentation and couldn't find what prompted the question.

By Smurfette (not verified) on 05 Oct 2011 #permalink

I've done a quick comparison of the different descriptions of the same blot by Mikovits (the table is linked to my name)
Here's how they misused the original western blot experiment in:
A. The Science paper
Lysates of activated PBMCs (peripheral blood mononuclear cells) in lanes 1 and 2 are actually lysates of T cells (we donât know whether activated or not), a subset of PBMCs.
Patient sample 2905 in lane 3 and patient sample 1674 in lane 6 are treated with 5-azacytidine in the original experiment. This is not disclosed in the Science paper.
B. At the Ottawa talk
Lane 1 (T cells in the original experiment) is described as âNormal PBMCâ
Lane 2 (T cells in the original experiment) is described as â2905 PBMCâ
-In other words a non patient control sample is being described as a patient sample in the talk.
Lane 5(PBMC4/10 in the original experiment) is described as patient 1674
-Again, describing a non patient control as a patient sample.

Sigmund - Yes, I wanted to post a side by side comparison of the 3 sets of labels which makes it even more glaringly obvious, but the comments don't seem to allow any of the HTML tags that would do that. I don't understand what Ruscetti was going on about in yesterday's ScienceInsider article about changing the ID numbers for privacy reasons. Is he off his rocker too now?

By Smurfette (not verified) on 05 Oct 2011 #permalink

"I don't understand what Ruscetti was going on about in yesterday's ScienceInsider article about changing the ID numbers for privacy reasons."
I think he was trying to deflect criticism from the obvious questions. He is correct that the patient IDs were changed - and it is not unusual to do that in medical research, primarily for reasons of patient confidentiality. If that was the only difference between the labels then there would be little or no ethical problem (so long as you don't describe it as a completely new experiment). The real problem arises with other changes, namely the omission of the 5-AZA treatment of the patient samples in the Science paper and the decision to describe the normal controls as non-5-AZA treated patient samples in the Ottawa talk.

It also appears that the blot was for XMRV RT and not gag, if you believe the yellow-tape labels.

It is worse than that!

Something else that was not disclosed in the Science paper is the fact that the control samples were NOT collected by WPI or the participating physicians, but rather were purchased from a serum bank. Therefore, they were collected under entirely different circumstances,with different tubes and protocols. This tip is from someone VERY CLOSE to the situation who cannot come forward for fear of being sued by Harvey Whittemore.

By Fearful tipster (not verified) on 05 Oct 2011 #permalink

#464 "Oh dear Angela, busted."

Possibly but there's a whole slew of pompous arse'church lady' types whose 'chilling effect' on discussions on the M.E/CFS forums is, if anything, even more pernicious than that of the HGRV headbangers, the Wooers and the anti psychiatrist obsessives. For the 'church ladies', Abby's crimes aren't just her 4Chan sensibilities but being female, young and not deferring to her betters (older females like Mikovits and the church ladies ! not that some of them aren't male of of course) M.E/CFS predominantly affects the over 30s and and younger sufferers tend to be more severely affected so the forums have almost no young folks to stir things up.

Sigmund,

I do believe this issue you raise along with the simple fact that the same experiment was being used to report different findings has somehow been 'overlooked' by those engaged in 'debate'.

Also the same experiment was used to supposedly support two supposedly different things:

Lombardi = XMRV association claim

Ottawa = HGRV (nont XMRV) evidence claim

And yet patients were found 'positive' for XMRV by WPI and/or VIPdx using the same essays as Lombardi et al.

If my conclusions are 'wrong' then do please correct me. Here to learn after all - and generally I do unlike in other places I might add.

@In Vitro Infidelium

Possibly but there's a whole slew of pompous arse'church lady' types whose 'chilling effect' on discussions on the M.E/CFS forums is, if anything, even more pernicious than that of the HGRV headbangers, the Wooers and the anti psychiatrist obsessives. For the 'church ladies', Abby's crimes aren't just her 4Chan sensibilities but being female, young and not deferring to her betters (older females like Mikovits and the church ladies ! not that some of them aren't male of of course) M.E/CFS predominantly affects the over 30s and and younger sufferers tend to be more severely affected so the forums have almost no young folks to stir things up.

Excellent points.

Of course Kennedy doesn't have CFS so she's apparently free to spend her entire life on the internet abusing people and rambling incessantly about everyone's hatred of CFS patients.

By frozenwarnings (not verified) on 05 Oct 2011 #permalink

@XMRV Positive UK

"I have never read such nasty comments in all my life."

Really? You wanna try those CFS patient forums, you'll see plenty of nasty comments. Or try being a scientist researching CFS, they get tons.

By frozenwarnings (not verified) on 05 Oct 2011 #permalink

Jack, I think the logic is that there is some degree of cross reactivity of the antibody against p30 such that it will recognize the p30 gag protein of similar viruses. In such situations the same western blot test could, in theory, detect either XMRV or one or more of these other related viruses.

Again, this obsession with the finer details of budding virus microscopy pictures. Let it go, people! @450 has put some truly important information on the table. Judy was selling vitamins for Pharmanex before going to work for WPI? Denise Grady at the New York Times is going to have some 'splainin to do for the crap-ass reporting of Dr. Judy's past employment. "She was tending bar at a yacht club when a patron said her constant talk about viruses reminded him of someone he knew in Nevada." She's proven herself to be an excellent multitasker, efficiently combining two experiments into one result, so maybe she could mix drinks AND sell vitamins under a multi-level marketing franchise? Is this scientifically possible?

@XMRV Positive UK

"I have never read such nasty comments in all my life."

Really? You wanna try those CFS patient forums, you'll see plenty of nasty comments. Or try being a scientist researching CFS, they get tons.

By frozenwarnings (not verified) on 05 Oct 2011 #permalink

@XMRV Positive UK

Well, I'd rather be called a "cunt" (good reason to go fuck myself btw) than be called dishonest, part of a conspiracy to keep people sick or something similar.

In fact, while Abbie has actually ARGUED why Mikovits is what she is before actually calling her it, the enlighted few at the mecfsforums have asserted all these ridiculous accusations because they don't happen to like the results of McClure, Van Kuppenveld, Switzer, Coffin, Miller, Singh, Stoye and many, many other scientists that were only trying to help them (and you).

You should really direct your anger there (if you have an account, I believe they're not accepting any new members ;-) )

Beautiful detective work. I especially like the red/blue/purple trick to see if they're the same image. What software did you use for that? I'd like to try it on some "suspicious" gels I've seen recently.

@XMRV Positive UK

I personally don't go in for the type of language that is sometimes used, but you will hear much worse just watching telly after the watershed.

However, if you want to comemnt on something worthy of your concern, why don't you direct your focus at the institute that persuaded you to part with $500+ to get an unvalidated blood test demonstrating absolutely sweet bugger all, when it knew it was premature and inadvisable to do so, having been told so often enough by people who know about these things.

Then direct more of your anger at the scientists/clinicians who persuaded dozens (hundreds?) of patients to take toxic and expensive antiretroviral drugs on the basis of their botched serology tests.

Seriously, if a pharma company like Glaxo or Merck had tried to get away with such a ridiculous diagnostic/therapeutic construct, it would now be facing a multibillion pound class action suit.

xmrv positive UK.... well, first you should be changing your nym, how does "contamination positive UK" sound? a liitle long? yeah, how bout "whoops, I fell for a shitty science".

a little advice for all the church ladies or anyone offended by our "snark":

Stop focusing on our language..focus on our message:
YOU HAVE BEEN DUPED!
get a little pissed of at that...

I HATE THE LANGUAGE POLICE!

Trep,
"It also appears that the blot was for XMRV RT and not gag, if you believe the yellow-tape labels."

I was looking at that, too but couldn't decide if RT was short for "Reverse Transcriptase" or "Room Temp". Given that it's placed before "10 sec", it may be an indication of the experimental conditions rather than the target. Or not. I was curious about that, too though.

By Poodle Stomper (not verified) on 05 Oct 2011 #permalink

@ PS and trep..lots of good qustions being raised...hopefully someone will forward them to science mag, since Judy sems to answer their questions..

also @450...WOW..just WOW...I hope you didn't loose alot of money in her woo scam...

By mary (abbie's ilk) (not verified) on 05 Oct 2011 #permalink

@ Redruth & Smurfette:

Yes, the virus budding may be caused by demethylating agents, which derepress ERVs (endogenous retroviruses). 5-AZA, the chemical used to create the original gel for the pictures discussed here, is such an agent.

@Ronnie:

It is extremly unlikely that gamma retroviruses can infect humans at all.
http://www.sciencemag.org/content/333/6038/94
"In addition, we found that these gammaretroviruses were strongly (X-MLV) or partially (XMRV) susceptible to inactivation by sera from CFS patients and healthy controls, which suggested that establishment of a successful MLV infection in humans would be unlikely."

@ Alan:

Wow, you don't know anything about scientists at all. We value data over politeness and scientists are generelly very rude to each other if they don't agree, especially if they are working on the same topic. Generelly we just prefer to not involve the public in our feuds.
In the latest Sciencey comment, while calling ERV 'snarky', the author generelly approves her treatment of the XRMV->CFS affair. It seems likely that her busting of Mikovits' fraud will help her career in science.

By mo (one of Abb… (not verified) on 05 Oct 2011 #permalink

Actually, I have a question here for ERV (since you do all the fun retrovirology stuff); what size would one expect for a gag on a WB under these conditions? Is it the size shown in the image? O.o

By Poodle Stomper (not verified) on 05 Oct 2011 #permalink

Reading Angela Kennedy on the "reasonable folks" MECFS forum makes me real curious about what insanity I'm missing by not being able to read V99 and co. If the reasonable folks sound like WND after the birth certificate was released ...

Poodle Stomper, I think it's anti-reverse transcriptase.
I wouldn't write the temp on my gel pictures, they are all incubated in the same room anyway. it says "alpha-xmrv RT" what else could it be? If it's not reverse transcriptase, the lab slave didn't write the protein on it, or they used general, polyclonal AB against all XMRV antigens? That should give more bands, shouldn't it?

By mo (one of Abb… (not verified) on 05 Oct 2011 #permalink

How likely is it that 5-azacytidine would induce expression of endogenous retroviruses in human PBMC? My pubmed scan turns up examples in mouse cells, some human cell lines, and lymphocytes from patients with some illnesses. Has anyone done this with normal primary leukocytes? I'm trying to get my head around the suggestion by Drs. Mikovits and Ruscetti that the treatment was not "germane" to the Lombardi paper.

lol, "millions infected" but 170 signers. Maybe this shows the percentage of supporters Mikovits still has among the CFS patients about right.

By mo (one of Abb… (not verified) on 05 Oct 2011 #permalink

"I'm trying to get my head around the suggestion by Drs. Mikovits and Ruscetti that the treatment was not "germane" to the Lombardi paper."
The whole point of the way the experiment was presented at the Ottawa talk was to suggest that 5-AZA treatment was not only "germane" but, in fact, entirely necessary for the p30 gag protein to be detectable.

Michael Kingsford Gray:

Paul Myers is a Tone-White-Knight?

Wow. Who knew?

Fearful Tipster:

That's interesting if true, but note that we've had evidence for the other tips so far. It might have to wait for the investigation before we can get excited about yours. At least, I can't think of another way to get evidence for it.

Alan/UK:

So, "Abbie's MEEEEEAAAANNN!!!!"? That's your argument?

Sigh. Look, I shouldn't have to explain any of this, and you almost certainly won't listen anyway, but here goes: I can't imagine what being a CFS patient must be like, and such people have my sympathies. That has no bearing on my devotion to the scientific method and making unvarnished criticism and praise where they are due.

It seems to me there are two primary problems with some of the CFS community. First, the lingering stigma of mental illness. Some evidence suggests some CFS cases may be psychogenic. But because mental illness has long been used as a pejorative and a badge of shame, there is a strong emotional motivation to reject this hypothesis. It's fundamentally wrong and, to me, revolting to see patients denying possible disease causes or diagnoses because they've been conditioned to believe it makes them a BAD PERSON. Guh. But it wouldn't be the first time we've done that.

Second, there is a desire to find SOMETHING concrete to explain such a nebulous disease. Much as we've seen with the antivax crowd, patients and those close to them need explanations, need something to help them build a picture of what's going on. Even if treatment is generations away, it somehow feels better to at least know what's making you sick, and maybe to have someone to blame. Although of course, some do then rush to false hopes of treatment.

In that context, there will be people--both honest and dishonest--who will be more than happy to offer explanations and possible treatments. Mikovits/WPI were one of that group. Their data was interesting but iffy right from the start, and the quality of their data and their explanations of it went downhill from there. Please remember that you're dealing with a skeptical scientific community with well-honed instincts and skills for detecting and dissecting bad science. Mikovits/WPI were doing bad science. And eventually they got pretty openly unethical about making some pretty wild and unsupported accusations of critics, including implying fraud. In retrospect this has a strong whiff of "protest too much".

So yes, we're rather pleased to see Mikovits crash and burn. We detest bad science, and we detest willful practice of it even more. Add in Mikovits' hypocrisy and we feel she deserves everything coming to her. But what you have to recognize is that part of our pleasure is in seeing real science given a better chance, in seeing patients no longer being mislead. Many people are identifying with Mikovits and so take all this personally. Don't. I don't care how much you may disagree with our opinions of the quality of Mikovits' science, you need to recognize that we HAVE those opinions, and in that context we're quite justified in wanting to see HER disgraced. Whether you've decided you "stand with her" doesn't make a damn difference, because it doesn't affect the evidence one whit. I can't blame you for that, but neither does it make Mikovits any less guilty.

Jeff-- The 5-AZA, I think, is key to everything.

Epigenetic modification of cells to induce ERV particle formation explains every weird bit of data in that paper, from the westerns, to the 100% peak-shift in the flow data, to the budding virus.

When you add in the fact that there are no normal + 5-AZA in Fig 2c, Im assuming none of the normals in any of the experiments got 5-AZA, and everything in that paper is an ERV artifact.

The only thing nailing anything to 'XMRV' and not an ERV is the sequence data from Silverman, and that has been retracted.

(I will have a post up late tonight/early tomorrow explaining this more fully)

@Dr. Stomper #484
The label says anti-XMRV RT, which almost certainly means anti-XMRV reverse antibody. I have no idea how they could get bands at 30 kd with an anti RT antibody.
TCC