Comment on Lipkin XMRV Study

[Guest guest]

Thanks to Maureen Goggins

Retraction Watch

Tracking retractions as a window into the

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Science has *not asked for a

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arsenic life paper, and why

situation is unlike MRV-CFS

with 35 comments

See: http://bit.ly/M3BJW6

A patient ME/CFS advocate (see below) recently

gave an exposition of community concerns about

the whole so-called ‘XMRV’ issue which scientists

(and, with respect, The good people at Retraction

Watch) would do well to read. The problem of how

science can be corrupted as a process by politics

is something that Retraction Watch will inevitably

find themselves having to address

[]

My view on the Lipkin “XMRV” study is one of

strong suspicion and skepticism. I will preface this

by saying that I am hopeful that he will produce a

quality study that provides scientific answers and

isn’t swept into town in a tsunami of self-righteous

political triumph. But I would be shocked if he

actually does.

The main problem is that everything Lipkin has said

and done to date with regard to this study is

indistinguishable from astute politicking aimed at

ensuring that this study seals off this line of

research once and for all. I’m not saying that this is

definitely the case, merely that Lipkin has yet to do

anything to logically preclude this motivational

possibility. Through a lens of such politics, all of

his “maverick” actions are perfectly coherent:

** Carrying on with the study in defiance of

criticism: The negative faux “replications” and the

BWG didn’t successfully put out the political fire,

so another study is necessary. However, it must

be carefully framed as the final word (an absolute

nonsense concept in science) and conducted by

someone who has delicately jockeyed themselves

into a superficial position of agnosticism. Despite

patients being admonished endlessly about

“following scientists instead of the science,” it is

hoped that they will in fact follow someone down a

path of corrupted science based solely on his

appearance as caring and even handed.

** Getting Mikovits and Ruscetti involved: This is

necessary to give the appearance of actually

trying. Someone who accepts the carefully

cultivated image of Lipkin’s agnosticism would

likely to a double-take at any attempt that entirely

excludes the primary proponents. The narrative key

is to have them “involved,” even using their own

tools and methods, but to remove crucial elements

of the process from their control (in this case

cohort selection; sample collection, processing,

coding; overarching study design and analysis).

** Saying a number of “open minded” things about

ME: Words are free and never warrant suspension

of skepticism prior to actions (in this case the

actual scientific quality Lipkin produces with his

study). In fact, the use of hopeful words to prime

the populace for destructive action is a timeless

political tool, a “fig leaf.”

Again, I must stress that I’m not accusing Lipkin of

being motivated in this way, nor am I attacking

him. I am simply pointing out a possible motivation

that is entirely consistent with what has been said

and done thus far. It won’t be until his study is

published that we will be able to evaluate the

integrity of his actions and words. It is entirely in

his hands to produce research that is rigorous,

logical, and measured in its conclusions.

There are, however, a number of aspects to this

study that would suggest this political motivation is

more than a mere possibility:

** Requiring participants to pre-accept results in

order to participate (i.e. gagging them): It’s hard to

imagine any legitimate reason why an honest

study would require this. It reeks of a totalitarian

attempt to control the message after publication

and marks an effective continuation of gags on

Mikovits.

** The very nature of the study: Why yet another

“do-or-die” test under novel conditions? This is akin

to demanding that because someone claims

evidence of a novel phenomenon, they must

immediately know enough about it to always

reproduce it under any conditions presented to

them. Yes, blinded and controlled reproducibility is

crucial, but not at square one of understanding

(unless, perhaps, your goal is to exclude additional

understanding…).

I think that the only honest approach to get to the

bottom of things at this point is for Lipkin to sit

down with Mikovits and Ruscetti and see what they

are finding and then work closely with them to flesh

out the many unknowns surrounding these

possible viruses (e.g. better contamination

controls, better understanding of viral life cycle and

tropism and reservoirs, better understanding of the

role of collection and processing, better

understanding of methodological nuances and

sequence variations). If they cannot find some

agreed upon explanation such as contamination,

they can at least acquire enough understanding to

devise a blinded test that will reasonably control for

these current unknowns, which necessarily plague

this Lipkin study.

Interestingly, this is the precise approach that

DeFreitas recommended to the CDC, which they

declined due to the cost of a plane ticket. Yet

surprisingly the CDC found the funds to force upon

her a series of eerily similar, premature,

CDC-controlled “do-or-die” tests that “disproved” her

finding.

** The secrecy of the design: Obviously the details

will be known upon publication, and any criticisms

levied thereafter. Obviously the study cannot begin

until the design has been worked out, so why not

release the details ahead of time, especially if (with

a straight face) you intend it to be “definitive”?

Wouldn’t you want to tidy up any overlooked loose

ends before starting, as it would be laughable to

genuine scientists to hear of a fatally flawed study

being sold as the last word? The reason for the

secrecy cannot be that Lipkin is ensured of

producing a flawless study and therefore it would

be pointless to air the details publicly, as that

would imply that the whole peer review process is

unnecessary. Is the canard about “that’s not the

way it’s done” so deeply entrenched that it cannot

be put aside to make sure this all-important study

is robust? Or is it just easier for criticisms to be

conveniently lost in the media frenzy that will

accompany a negative study?

** The possibility of this study being used to

discount all retroviral involvement: In Lipkin’s letter

from last December, he says the study will

“address the question of whether a retrovirus is

associated with disease.” There are already

serious questions about whether this study will

even adequately look for relevant MRV sequences

(see below), which is a small subset of all

retroviruses. The question of whether a retrovirus is

involved is far far beyond the scope of this study,

esp if they don’t do extensive testing for reverse

transcriptase, extensive searching in non-blood

tissues, and extensive, unbiased deep sequencing.

If the study is negative, I fully expect many “lazy”

media articles to “accidentally” state that the

involvement of a retrovirus has been definitively

ruled out in ME.

From the perspective of patients, there is only one

outcome of this study that could be devastating.

That is if MRVs are involved in ME and this study

renders research into this area politically infeasible

and scientifically suicidal, as it would mean there

will never be full understanding of or a reliable

treatment for the root cause. It’s far worse to seal

the only path to freedom than it is to wander a bit

further down a dead-end. Unfortunately, the Lipkin

study seems poised to deliver this nightmare.

I think it’s also worth considering some of the

extraordinary implications if this study is actually

positive. It would mean that Fauci (who has

presided over decades of government negligence in

this disease), following years of successful legal,

political, media, and pseudo-scientific attacks on

this finding, has inexplicably allowed his star pupil

to reveal the truth just before the political finish line.

It would mean unavoidable realization by the public

(in an election year no less!) that not only is there

a new retrovirus loose in the population, but that it

has been negligently allowed to spread and destroy

lives for decades by the government health

agencies.

It would mean catastrophic cost escalation for

health insurers. It would mean that the BWG and

many of the negative studies would almost have to

be investigated for fraud. It would mean a fall from

respectability for many of the “top” retrovirologists.

It would expose the psychobabblers for what they

truly are. It would mean very uncomfortable

questions about viral origin and government

knowledge. It would force a re-evaluation of all of

the previous “rumor viruses,” thus exacerbating all

of these other issues. Simply put, it cannot be

allowed to happen.

Lastly, I want to enumerate just some of the open

questions that would have to be left on the table if

this study is negative and successfully sold as

“definitive”:

** What about issues of cohort selection, sample

collection and processing, viral life cycle and

tropism adversely affecting the study? After all, the

BWG failed in its duty to better elucidate these

issues, so they now represent unknown variables

in Lipkin’s study. When you don’t even know what

variables you should be controlling and accounting

for, your conclusions are wholly unreliable.

** What about novel sequences found by Hanson,

O’Keefe, the Lithuanians, and Grossberg? None of

these are close enough to VP62 to be simply

written off as contamination, so leaving them

unexplained (and likely un-searched-for in Lipkin’s

study) shows an extreme lack of scientific

ingenuity.

** What about Mikovits’s unsequenced isolates? It

seems laughably disingenuous to claim that

something is not there when you haven’t even

bothered to take a small step (sequence the

isolates) to identify precisely what you’re even

searching for (the ME virus sequences). Not even

Judy knows at this point exactly what sequences

she found originally.

** What about Dr. Snyderman’s results? If Lipkin is

the maverick some claim, and the deep

sequencing expert some claim, and he’s serious

about getting to the bottom of this disease, how

could he possibly not take on such a

straightforward case that others have turned down

out of fear?

** What about an ARV clinical trial? Putting aside

all the disingenuous “concern” from non-patient

onlookers, it would be completely trivial to find very

willing volunteers. Dr. Snyderman’s data alone is

more than was necessary to launch trials of

Rituximab, a far more dangerous drug.

** What about the PC and BPH results? If the

ordained ministers of Science have proclaimed that

MRVs don’t exist in ME, it would be rather

incongruous for these studies to persist.

** What about searching for reverse transcriptase?

Seems odd to say you found no sign of RVs when

your search was limited to specific–but

unknown–sequences and never extended to more

generic markers of RV infection.

** Why has no attempt been made to test tissues?

Evidence from the macaque study as well as

behavior of MRV-like viruses in other animals would

strongly suggest that blood is not the ideal place to

look, esp until more is understood about the virus.

** What about all of the still-unexplained non-PCR

results (serology, IHC, FISH)? These cannot be

simply written off as contamination, and the

explanations to date (cross-reactivity, etc) have not

be supported by anything other than desperation

and guesswork.

** Philosophically and practically, could the axioms

of modern retrovirology ever permit the discovery of

a slowly replicating exogenous retrovirus with some

vague semblance to human or animal ERVs? I

believe this is essentially the question that

anciendaze has been positing for some time. In

essence, the axioms and assumptions that rule

the field exclude any MRV-like virus from ever

being “found” in humans as any MRV-like virus

would have enough similarity to endogenous

sequences and be close enough to limits of

detection to always be reflexively dismissed as

contamination.