XMRV: The rats are trying to climb out of the sewer

I have known about this for a while, and have been debating whether or not I should say anything. I really dont want to give the disgraces responsible for the XMRV-->CFS fiasco, Judy Mikovits, Frank Ruscetti, and Sandra Ruscetti, any more attention. What turned my opinion was something T.R. Gregory said yesterday:

I don't *believe* in science or have *faith* in science. Rather, I *trust* scientific reasoning and the conclusions that come from evaluating evidence scientifically. The difference is that belief and faith don't need to be backed up. Trust, on the other hand, is earned.

Of course he meant this statement in the context of evolution-- ie 'I dont believe in evolution, I accept evolution as a fact based on the evidence we have to support it'.

But our trust in science sits on top of the assumption that no one is deceiving us. I am sure many of us have had the argument with a Creationist about a 'trickster god'. Maybe the universe really is 6,000 years old, but a sneaky deity made it appear billions of years old for the lulz. Maybe all organisms were specially created in the Garden of Eden, but a troll god put in ERVs and pseudogenes and such to fool us into thinking common descent is true.

Thats possible.

But thats not how science works.

We all operate under the assumption that other scientists are being open and honest about what they are doing, and what they find.

Science could not operate if we did not trust each other. There would be no point, really. We would all just be redoing other peoples experiments over and over. Hell, the new grad student would have to redo everything the leaving post-doc did, the PI would have to personally redo everything the new grad student did. And lord knows you wouldnt be able to trust that shifty-eyed tech.

At some point, to move forward, you would have to say "I trust this. What next?"

So what happens to the scientists who breech that trust?

Frank Ruscetti and his wife Sandra Ruscetti are out at the National Cancer Institute. Frank retired shortly after the XMRV fiasco was resolved. While that is perfectly believable, I do find it interesting that the NCI wiped him off their website ASAP.

http://ccr.cancer.gov/staff/staff.asp?profileid=5488

Sandra recently had a paper published, otherwise, not much if anything since XMRV. I saw no official 'retirement' statement, but she is no longer listed as an employee of NCI either.

Judy Mikovits is also out of the scientific community. She is releasing a book (with an anti-vax co-author) with a hysterically funny title I couldnt have made up if I were trying to make a joke:

Plague: One Scientist’s Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome, Autism, and Other Diseases

Good Lord! LOL! If I am not even mentioned, I will be very put out. Im already disappointed she hasnt offered me a review copy.

:(

LOL!

Okay, so, the Ruscettis are retired and Mikovits has a blossoming career everyone saw coming in anti-vax-ism.

But thats not all!

Frank and Judy have opened up a 'consulting' shop (go ahead and click through the site. its a riot). I dont know why. I cannot think of one possible occasion on which I would 'consult' either of these people. And, for some reason, even though 'consulting' work is typically accomplished via travel or internet/phone calls, the Ruscettis have relocated across the country to Carlsbad, CA... where Judy lives... because thats not at all... 'odd'...

...

 

So, there you go, kids. This is what happens when a 'scientist' is no longer trusted. Youre out.

I am satisfied with how things played out with the XMRV fiasco.

Happy? No. Noooooo. No. 'Happy' would require the phrase 'internal investigation by the NCI on all previous publications by Mikovits or the Ruscettis', and to my knowledge, that didnt happen. But Im satisfied. Ultimately, what was supposed to happen, happened. Science isnt perfect. But the system we have works pretty damn good.

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You all might remember, Judy Mikovits and Age of Autism contributor Ken Heckenlively, were releasing a book on 'their side' of the XMRV fiasco (the scientific side of the XMRV fiasco). Plague: One Scientist’s Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome,…
I mean for Petes sake: Chronic fatigue syndrome researcher Judy Mikovits arrested I mean, this is funny. No doubt this is funny. Its funny to see The Patient Community defending Mikovits, the woman who said she didnt have a problem lying to patients when it was convenient for her. Its funny to see…
From a basic, logical perspective, XMRV as the causative agent for any disease has been dead in my eyes, for quite some time. One would literally need to bend the rules of basic epidemiology, basic cancer biology, basic immunology, basic virology, time/space for 'XMRV' to be 'real'. But of course…

I'm with you, Abbie. And the fact that these quackadoodles are spiraling off into anti-vax territory, should be sufficient to demonstrate to the lay public (some of whom may not be able to parse the bits about mouse contamination) that they really are quackadoodles after all.

T.R. Gregory's comment provides exactly what's needed in the debates about the nature of belief. We've needed a new word for a while, to describe the difference between unsupported belief and supported belief, and there it was, one syllable, five letters, almost staring us in the face: "trust."

You've restored my trust in science, specifically the peer review/consensus part of the process. And, as Stephen Hawking has been quoted as saying, "the greatest enemy of knowledge is not ignorance, it is the illusion of knowledge."

p.s. I love your blog!

By Steven Trisel (not verified) on 22 Mar 2014 #permalink

"I am satisfied with how things played out with the XMRV fiasco."

Satisfied?

No investigation what so ever, people simply get fired, retire or are "out of the NCI". That's all?

The "scientific community" still has only . No other consequences, no insights, no lessons learned, no improved oversight and nothing that would in future help us avoid such "fiasco"? (If that is the right "f-word"…)

Satisfied is hardly the word I would use.

PS: While I am glad that you openly name Frank and Sandra as culprit, I can't help to notice that you waited until they became non-persons. Maybe there is a lessons to be learned how such a "fiasco" could be avoided? (Again, probably another word starting with f would more suitable than "fiasco" – another lesson to not openly name what went wrong, per chance?).

And why stop with Frank? What about Robert, where Frank learned his trade? No, we can't go there, because Robert, unlike Frank, is still revered in the "scientific community" – any criticism about Robert would play into the hands of the "crazies" and endanger the future in the "scientific community" of the person making the criticism.

If that is "the system we have [working] pretty damn good", then I have to ask the question for whom it works "pretty good"? For people? For the furthering of scientific knowledge? Or for the scientists being part of the rat race?

I want to avoid that such a "fiasco" happens again, but for this we need to find out why it happened, how it happened, and what circumstances facilitated it happening – regardless whether it is Judy, Frank, Sandra or Robert committing an "fiasco". I don't know what has to change for this to happen – but I do know that Abbie is satisfied that nothing changes substantially, she is satisfied that the "scientific community" is not interested in investigating that "fiasco", and she must be satisfied that scientists can repeat such fiasco if it suits their bank account, fame and scientific standing. Is it too much of a speculation and too much libel to ask if Abbie might see playing along with such a situation as helpful to her career?

I know: The only thing to learn for any potential "fiasco committing scientist" is: "do it like Robert, not like Frank." Maybe Frank got desperate in his old days, and wanted to pull a Gallo before he fades into history without haven't much to show for? Do something he and Robert did with HTLV? Grab a virus others have found, and claim it as their own? We will never know, because the "scientific community" does not care, and Abbie is satisfied.

Time to move on, nothing to see here.

By Tony Mach (not verified) on 24 Mar 2014 #permalink

I wanted to write:
The “scientific community” still has only had superficial interest in investigating the fiasco.

Oh well… Maybe I am not "satisfied" enough to write calmly…

By Tony Mach (not verified) on 24 Mar 2014 #permalink

One more thing (to add something constructive):

If you hedonistically seek the pleasure of being "happy", how about writing a FOI request to the NCI, asking for all you get regarding the "fiasco" (emails, lab books, etc.), not giving up until you have something, publishing some crucial points you find, generating some publicity, and thereby forcing the NCI to do a investigation?

(Granted, one has to hope the "scientific community" at the NCI doesn't turn such an investigation into an whitewash – but hey, you're the one who's satisfied with their work! I'm just a sarcastic and sardonic commentator who expects nothing positive to come from the NCI. Surely you can prove me wrong with science and stuff. And surely this would not hurt you career, right?)

By Tony Mach (not verified) on 25 Mar 2014 #permalink

Well, at least they're off the ship.

I got involved with a group at Tulane in New Orleans who were trying to replicate the original XMRV paper in some clinical pathology samples of prostate... My job was to redesign the assay (primer/probe) to make it commercially viable ... needless to say, I thought I had a working assay... until we realized that the results depended on which real-time instrument it was run on, or which technician, or which pipettors were used in the prep.

That, my friends, is not a working assay.

The illusion of XMRV paid my salary for a few days... but it was bad science from day 1.

By c0nc0rdance (not verified) on 27 Mar 2014 #permalink

I would argue that some of the bad science-- contaminated RT kits, contaminated Qiagen columns, etc-- was a finding that saved us time/money in the future. Techniques are just getting more and more sensitive-- this contamination would have tripped us up at some point.

But there is a very, *very* big difference between 'Crap. Im detecting mouse ERVs in the mouse DNA in my RT kit... not an exogenous retrovirus in an infected patient' and 'Wow there just happens to be XMRV plasmid DNA in all the patient samples! **WIIIIIIINK!!!**' and 'Im just gonna not tell anybody Im activating all these ERVs with epigenetic modifying reagents and tell everyone my antibody is reacting to 'XMRV'"

There are mistakes that could fool anyone, and there is implied and/or outright deceit.

Given Kent Heckenlively's previous coverage of the XMRV issue, I cringe at the thought of reading this book even for entertainment. I'd probably rather read 'Obama the Muslim Terrorist Who Wants to Take Away Your Right to Die in an Emergency Room From a Perfectly Treatable Disease: A Book for Children' by the Republican National Party.

The sad thing is that prior to the XMRV debacle, the WPI actually had a pretty wide-ranging research program and a lot of momentum and patient support. Then when XMRV happened, Judy Mikovits deep-sixed the Institute's entire research program to focus solely on XMRV, which probably set back the Institute's research by years and which caused Dr. Daniel Peterson to have to leave and go start his own org. The funny thing is that Judy Mikovits' name is still associated with 'Real Science™' by certain groups of patients, while the names of everyone who advocated proceeding with caution are still mud with these same individuals, even after all this time.

“We really retooled our entire programme and did nothing but focus on that [XMRV],” she [Mikovits] says.
'Fighting for a cause' by Ewen Callaway
Nature 471, 282-285 (2011) doi:10.1038/471282a

Mikovits is talking at AutismOne (an autism parent convention where the likes of Jenny McCarthy and Andrew Wakefield are given standing ovations)

Environmental Causes of Autism—Investigate if you dare!
In 2006, Dr. Mikovits became attracted to the plight of patients with chronic fatigue syndrome and autism. In only five years, she developed the first neuroimmune institute from a concept to a reality and is primarily responsible for demonstrating the relationship between immune-based inflammation and these diseases. In 2009, the identification of a retroviral association with ME/CFS and autism by her laboratory would forever change her world as the diseases had theirs. In the fall of 2011, a mistake made by the original discoverers of XMRV was used to scapegoat Dr. Mikovits and the patient communities, sending a clear message of the fate of anyone who dared to investigate environmental causes of autism.
Judy Mikovits, PhD

Dr. Mikovits earned her PhD in biochemistry and molecular biology from George Washington University. In her 35-year quest to understand and treat chronic diseases, she has studied natural products chemistry, immunobiology of retroviral-associated inflammatory diseases, eipgenetics, stem cell biology and drug development with the goal to understand complex biological issues in order to yield unbiased integrated, cutting-edge diagnostics and treatments for patients and physicians impacted by some of the most challenging chronic diseases.

Doesn't look like she's backing down from her "discovery". And any mistakes were made by others.

By Matt Carey (not verified) on 16 May 2014 #permalink

She was a SCAPEGOAT!

Doesnt explain how plasmids magically got into patient samples, or why they lied about epigenetic modifiers, but, SCAPEGOAT!!!

I read this this morning. Totally raged out.

Shes not a goat. Shes a rat.

A huge irony is that this week was IMFAR, the largest autism science conference. There are a lot of talks about environmental risk facts. There's no blowback.

She's using the Andy Wakefield shield--claim it's because she took on "the man" and claim that the "scapegoating" is hurting the "patients".

But, hey, I got to go get someone from my old job to break into my old lab and grab the notebooks for me...(yes, that's sarcasm in case my old employers read this)

By Matt Carey (not verified) on 17 May 2014 #permalink