me+ME: Quote: What Cort Johnson doesn't want pwME to read

I am still following Phoenix Rising - a forum that was created by Cort Johnson, as he many times reminded people, and who also owns it - but I do so far more haphazardly than before, and mostly to see if anything new has developed.

Also, I am not a member of it since May 23, 2010 - this last link should give the more intelligent or more sensitive good insight into my reasons - and I am not so secretively either, as I suspect many are, i.e. participating under a fake name while hiding an identity that may upset many if it were known. I have concluded that one like me is not doing what he should be doing when he is trying to communicate in writing with anonymous ordinary folks or trolls on a very badly moderated public forum. For that has turned out to be just a waste of my time, honesty, and moral decency. (*)

However... yesterday I happen to have saved a post on PR-F, basically because I have my own issues with both Kurt and Cort, neither of whom I trust, while I strongly dislike Kurt, who vomited in my face in private, on purpose, in answer to a very polite and rational mail to him and other moderators.

This seems to be also like the experience of many others on PR-F, quite a few who have left there for that reason. And indeed, on an anonymous forum that is badly moderated (by Kurt and Cort, among others) it is very difficult to discuss anything rationally, let alone the bad moderation or biased views or impertinences of the moderators or owners.

Anyway... I had downloaded the following before others commented on it, which some ten persons did, I believe, since when it and the whole thread completely disappeared, without any clarification either.

So, to show folks with ME what Curt the Creator and Kurt the Pseudoscientist - Ph.D. in the writing of courseware for the lesser military minds in the US: that kind of "scientist" - do not want you to read or discuss, here it is, by one "asleep", whom I don't know at all, who joined PR-F in December 2009:

XMRV Lies: Cort, Kurt, and Cooperative Diagnostics

(This was prompted by Kurt posting a severely flawed and deceptive email from Cooperative Diagnostics.)

I want to outline a phenomenon taking place on this board that can only be described as an active, aggressive attempt to deceive PWC about the state of XMRV science.

This deception hinges on the repetition of two broad lies (by Cort, Kurt, CD, and others) that are meant to mislead people into a conclusion that the XMRV hypothesis is floundering.

Lie #1: Finding XMRV is easy

The first lie is the idea that finding XMRV is simple, especially using PCR. Whenever a new 0/0 study comes out, Cort and Kurt will descend upon the discussion to assure us that the scientists are honest and competent and that their methods should have found XMRV if it was there:

Originally Posted by kurt

...but these PCR tests used in ALL the XMRV studies have been capable of finding the level of XMRV infection claimed to be found by WPI.

Originally Posted by kurt

This approach would find evidence of ANY entrenched XMRV infection.

Originally Posted by kurt

The points I am personally persuaded of after many interactions with people involved in this issue is that there is no conspiracy, and the level of competence in all these studies is generally high.

This is pure opinion, made to look like fact. None of these negative studies have shown that their PCR or serology methods are capable of finding XMRV in a known positive clinical sample. As such, none of these negative studies have properly ruled out false negatives.

They “support” this opinion that XMRV is easy to find by pointing out that the WPI was able to detect XMRV via PCR (easily, according to them anyway):

Originally Posted by kurt

The Science 'methods' included using PCR without culturing and finding XMRV sequences in 67% of banked CFS samples. This study was equal to that method and goes well beyond.

Originally Posted by Cort

I have come to the conclusion that it really shouldn't be that hard to find. Why? Because it wasn't hard for the WPI to find.

Of course they fail to mention the macaque study, which shows that XMRV has a highly transient presence in the blood. They fail to mention that PCR is a very complex process open to many confounding factors (i.e. not all PCR methods are created equal). They fail to mention the Danielson et al study that showed PCR to be a very unreliable method of detecting XMRV in the blood. They fail to mention that the CFS cohort in the Science paper was highly viremic, which may have unintentionally helped the WPI find XMRV by an otherwise unreliable method.

Why? Because these facts don’t fit the narrative that they are trying to sell.

Lie #2: True scientific replication is not important

This lie takes two forms. The first form is an attempt to deceive people about what scientific replication actually is. Consider Wikipedia's description of replication:

The results of an experiment performed by a particular researcher or group of researchers are generally evaluated by other independent researchers who repeat the same experiment themselves, based on the original experimental description. (emphasis mine)

Now compare it to Cooperative Diagnostic’s invented version of replication:

Originally Posted by Cooperative
Using different PCR tests is not a failure to replicate, but is actuall what is required to replicate… (emphasis mine)

Note the stark difference: CD wants you to believe that different techniques constitute replication. Just because two studies use PCR (or serology), doesn’t mean they are the same methods. The devil is in the details.

The second and far more pernicious form of this lie is the idea that the XMRV hypothesis can be scientifically dis-proven without ever actually replicating the WPI’s methods:

Originally Posted by kurt

Exact replication of WPI's PCR test is less important than people realize...

Originally Posted by Cort

This is like a cascading effect - the more the negative studies pile up and the more things people try that don't work - it gets harder and harder to see how XMRV will work out - even if they never replicate the study. (emphasis mine)

The idea that a finding can be scientifically dis-proven in this manner is fundamentally flawed. It is a perversion of the scientific method. It is a political argument, not a scientific argument. The fact that Cort, Kurt, and Cooperative Diagnostics all subscribe to and actively promote this lie should alarm people.

Conclusion

So, taken together, these two lies provide the roadmap for burying XMRV. First, convince people that finding XMRV is easy and therefore all negative studies should be considered equally as valid as the positive studies (even though they don’t replicate their methods). Then, convince people that there exists some quantity of these flawed negative studies can override the lack of any true replication attempt.

I hope that this will enable more people to see through the increasingly transparent attempts to short-circuit the XMRV finding. I realize that some people will probably take offense at my use of the word "lies," but Cort and Kurt have been corrected on their misleading statements many, many times. At this point, their continued repetition can only reasonably be termed deliberate.

The fact is that Cort+Kurt refuse to discuss this and remove it from PR-F as if that is a moral, honest, rational thing to do suggests - once again - there is something rotten, behind the scenes, in PR-F.

Having written this, I just noticed there is now another thread: Where is the post on Cort / Kurt and XMRV ? - that is, as long as that is allowed to stand: Well, above is the post, as a service, as I happened to save it, because I have a great distaste for Kurt, who never does not lie, in my experience, since over a year of reading his posts.

Anyway... judge for yourself whether you can trust either Cort or Kurt, and whether the above is so frightfully impolite or indecent to merit removal as if by the inquisition.

I don't think so - and to repeat a point I made before, which worries me, simply because it touches also on my personal interests: These people do not speak for me about ME/CFS and are, in my opinion, not the right persons to lead or moderate persons with ME.

Having arrived at this point I consulted PR-F again, and found this by asleep, in a new thread entitled A Guide to XMRV Discussions

A Guide to XMRV Discussions

I want to point out two general ideas that keep popping up in discussions about XMRV research. I believe both of these ideas are factually inaccurate and threaten to undermine critical patient support for honest XMRV research.

Idea #1: Finding XMRV is easy

The first idea is that finding XMRV is simple, especially using PCR. There are two aspects to this idea.

The first aspect is that every researcher involved in this field is honest and competent and really wants nothing more than to validate the XMRV finding:

This is science and not a courtroom where motives matter. A scientist's motives are almost irrelevant, what counts is their data. Besides that I think your analysis of motives is incorrect anyway from what I know of these people.

The points I am personally persuaded of after many interactions with people involved in this issue is that there is no conspiracy, and the level of competence in all these studies is generally high.

Despite frequent assurances that all these researchers are honest and smart, we are left with a burning question: why do these scientists continue to produce such deeply flawed research that, from an outside view, does not resemble an honest, competent attempt to find XMRV? Why have none of them even tried to replicated successful methods? Do their actions match the characterizations commonly put forth? I say no, not even remotely.

The second aspect is that finding XMRV should be easy and that all of their attempts should have found it if it was really there:

...but these PCR tests used in ALL the XMRV studies have been capable of finding the level of XMRV infection claimed to be found by WPI.

This approach would find evidence of ANY entrenched XMRV infection.

These types of statements are assertions of opinion, dressed up to look like fact. Generally, the only evidence offered to support these assertions is the claim that these techniques work fine for other well-understood and well-characterized viruses. But there is no reason, logically or historically, that this should be a priori true for a novel virus like XMRV.

Furthermore, none of these negative studies have shown that their PCR or serology methods are capable of finding XMRV in a known positive clinical sample. As such, none of these negative studies have properly ruled out false negatives.

This flaw is usually painted over with apparent incredulity over the fact that the WPI was able to detect XMRV via PCR with purported ease:

The Science 'methods' included using PCR without culturing and finding XMRV sequences in 67% of banked CFS samples. This study was equal to that method and goes well beyond.

I have come to the conclusion that it really shouldn't be that hard to find. Why? Because it wasn't hard for the WPI to find.

They didn't have to go to extraordinary lengths to look for it. ..they didn't have to culture, they didn't have to use the 'wild-type' virus to validate it, they were able to validate it using VP62, they didn't have a particularly sensitive PCR...so why is the virus now, all of a sudden, on the limits of detection of PCR?

At a high level, these arguments assert that the future should pay heed to the past, that XMRV should behave according to our current state of knowledge. This is a fallacious argument.

On a more concrete level, these arguments fail to mention the macaque study, which shows that XMRV has a highly transient presence in the blood. They fail to mention that PCR is a very complex process open to many confounding factors (i.e. not all PCR methods are created equal). They fail to mention the Danielson et al study that showed PCR to be a very unreliable method of detecting XMRV in the blood. They fail to mention that the CFS cohort in the Science paper was highly viremic, which may have unintentionally helped the WPI find XMRV by an otherwise unreliable method.

Taken together, these aspects form an idea that artificially injects more credibility into the negative studies than is warranted. This idea glosses over the deep flaws in these studies and instead props them up on unsupported claims of goodwill and asserted simplicity.

Idea #2: True scientific replication is not important

This idea takes two forms. The first form is a mangling of what scientific replication truly is. Consider Wikipedia’s description of replication:

The results of an experiment performed by a particular researcher or group of researchers are generally evaluated by other independent researchers who repeat the same experiment themselves, based on the original experimental description. (emphasis mine)

In comparison, consider the following description of replication found on this forum:

Using different PCR tests is not a failure to replicate, but is actually what is required to replicate… (emphasis mine)

Note the stark difference. It is simply not true that different techniques constitute replication. Just because two studies use PCR (or serology), doesn’t mean they are the same methods. The devil is in the details.

The second and far more dangerous form of this idea that the XMRV hypothesis can be scientifically dis-proven without anyone actually replicating the WPI’s methods:

Exact replication of WPI's PCR test is less important than people realize...

This is like a cascading effect - the more the negative studies pile up and the more things people try that don't work - it gets harder and harder to see how XMRV will work out - even if they never replicate the study. (emphasis mine)

The idea that a finding can be scientifically dis-proven in this manner is fundamentally flawed. It is a perversion of the scientific method. It is a political argument, not a scientific argument. Often these claims will be accompanied by appeals to an unnamed researcher who confirms that this type of “science” is acceptable. It is not, and anyone who suggests otherwise does not believe in one of the most fundamental building blocks of the scientific method: reproducibility.

Conclusion

In conclusion, I believe these two broad ideas threaten to railroad much-needed public demand for legitimate XMRV research.

First, they threaten to convince people that finding XMRV is easy and therefore all negative studies should be considered equally as valid as the positive studies (even though they don’t replicate their methods). Secondly, they threaten to convince people that there exists some quantity of these flawed negative studies can override the lack of any true replication attempt.

This is, I believe, a dangerous recipe for short-circuiting XMRV research.

Unquote.

And here we have shamming Kurt "reply" to the above:

Originally Posted by asleep
Your wish is my command: http://forums.aboutmecfs.org/showthr...RV-Discussions

Thanks for re-wording your argument. Please also correct that on the other CFS forum where it is still posted online.

For the record, I was not involved in removing the post, but would have had I seen it. The reason for taking any post like that down is simple, it is illegal to falsely accuse people of lying, including on the internet, that is defamation of character. And generally if an accusation like that is made with no evidence, it is considered false. In this case of course there is no evidence because we are not involved in any conspiracy, and besides that, nobody knows enough for certain about XMRV to lie about it, we are all speculating based on a little data...

Defamation is serious trouble, any forum and the individuals involved can be sued for that type of posting.

And anyway, none of the accused would lie about something like this. We all care deeply about CFS, and are simply working from the information we have.

This puts me in a quandary, as I honestly believe Kurt is lying once again, and as he is now also threatening folks, albeit with innuendo:

Defamation is serious trouble, any forum and the individuals involved can be sued for that type of posting.

How can I speak the honest truth, in the US, where the freedoms are even greater than in Holland - outside forums moderated by the likes of Kurt, to be sure - if I honestly believe Kurt is a sham, just as I honestly believe Glenn Beck is a sham, if he is sane at all?

Well... OK: I'll make the same proviso for Kurt, the mighty military mind:

I really do believe dr. Kurt is a singularly dishonest person whom I also really do not believe to have ME, although - honestly! - I really hope he does... for otherwise he has been lying about that as well, and then someone might try to sue the pitiable fellow.

I do hope I have made myself clear, and if not, I side with Kurt's incomparably more intelligent and more moral - I ain't lying! - countryman Jon Edwards, whose immortal song to Bernie Goldberg equally well applies to dr. Kurt the sham:

"Go fuck yourself!"