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big new post from Hillary Johnson

Otis

Señor Mumbler
Messages
1,117
Location
USA
One tidbit from Hillary's blog

Managed to grab this quote (before the blog disappeared again?) from someone from Mikovits' team regarding the CDC cohort selection.

An (expletive) phone survey and a one-day clinical evaluation? They call us out on not giving a detailed clinical description, then they describe how they found these people through (expletive) Publishers Clearing House?

That's about the size of it.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
Its just a big mystery. I cannot fit it all together. I agree they must've wondered why their testing did not show XMRV while Singh's did. (She must've been wondered about the opposite). It all comes down to feeling very certain about your results; if you're feeling very certain about your results - if you feel that you've figured out the sampling dilemma, then maybe you go to the NIH and say - they are wrong, here's why they are wrong and here's what we think they should make them do that will show them that they're wrong. Or maybe they don't go to the DHHS at all - the DHHS comes to them and looks at Alter's study and thinks they've got the upper hand right now.

Kwietsol, I can't put the pieces together - how not finding XMRV in the WPI's samples works for them. I imagine that it could be that there is a very closely connected virus that is showing up and the CDC is the only one able to distinguish between the two thus far. That doesn't really make a lot of sense since as I remember the WPI cloned the virus and it was XMRV......I just don't know about this XMRV plasmid they got from Silverman; they plop it into their samples and can find it but can't find XMRV in the WPI's samples. Yet Silverman works with WPI on XMRV! So he believes its in there and he knows how to find XMRV - he has it, in hand! So he can apparently find it in their samples.....its crazy stuff....

I don't know. I just can't think that they are willing to saw the branch of the limb they're sitting on either. I think they think they've got it and the WPI thinks they've got it and we'll see who has the real answer.

If the CDC thinks they figured out why XMRV was really NOT in the WPI's sample I imagine there's a paper on that coming down the pike at some point. I imagine, though, that Illa Singh - an accomplished researcher - is making darned certain that all her tests are up to snuff.

I think you could very well be correct that the CDC believes they are right, but if so, I think it's a belief founded on a tightly-held prejudice: i.e., that CFS patients are crazy. That this isn't a physical illness. They went into this absolutely sure they wouldn't find XMRV in CFS patients, because they are absolutely sure that the symptoms are psychogenic. The problem is that prejudices aren't rational. People don't react rationally when prejudices are challenged. They distort facts to support their prejudiced beliefs, they pretzel reality, they will let themselves believe horribly convoluted distortions rather than abandon their prejudice. Scientists are not immune from this.

I used to think that scientists were logical thinkers, but as I've had more experience and gotten to know a number of scientists (not to mention marrying one!), I've come to realize that logic and science are different processes. Scientists have illogical, irrational beliefs like anyone else, and if anything they are MORE blind to them, because they believe themselves to be above that.

If you're too young to remember, you've probably read about and seen pictures of the reaction of white racists to the beginnings of the Black civil rights movement. I'm not saying the situations are analogous, just that it illustrates how rabidly people will defend a prejudice, and how hard it can be for them to view objectively evidence that challenges it.

The CDC's actions don't have to make sense from a scientific point of view. They will see them as making sense, because they see them through a lens of prejudice. They only have to convince others that their actions make sense. Unfortunately for us, the CDC still has a great deal of credibility in medical and scientific circles. And they are generally speaking to a receptive audience, people who are willing to believe them, because it's easy to believe that CFS patients are crazy. The people they're talking to are mostly ignorant about CFS, don't know the history of the CDC's relation to the disease, don't know that they are dealing with bigots, and may have their own prejudiced beliefs about CFS patients.

So it's possible that they still believe that XMRV is a chimera. Maybe they see their closely held beliefs being challenged, may even have some cracks in their own mental constructs, and are fighting a desperate last-ditch battle to avoid relinquishing their bigotry. The fight could get ugly.

So, yes, they may feel very certain of their results. That doesn't mean their certainty is based in reality.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi ixchelkali,

Just to bring this home, I recently had the reaction from an educated long-term CFS patient that he was flabergasted that there was any confirmation of the WPI findings. Even in our own community, we shouldn't discount the possibilty that many patients don't believe what is happening either. Scientists and bureaucrats with a vested interest in particularly points of view are going to be very hard to convince, even if the evidence keeps piling up as I suspect it will.

This is why I have started an email campaign in Austrailia, and intend to keep pushing it as a test case. We need to get the message out there so loudly that they realize we aren't going to go away until the science is done and listened to. Where-ever you are in the world, I suggest you do the same, but try to keep responses rational and factual. I know its hard, I share the rage (yes, the R word, not the A word) about all of this, but rationality trumps rage in many ways and we need to use our rage to help us drive rational debate, and not try to rationalize our emotions.

Email is not necessarily the best way however; if you have the resources then hard letters are a better choice because they are tangible. Emails, on the other hand, do leave an electronic trail. Keep it public, and we can all trace who knew what/when, and so know who to go after (legally or politically) if an XMRV pandemic is eventually established, and who to push to make sure that a proper response is carried forward. Of course, if you can physically meet with a target audience that might be even better than a letter campaign, but also more than many of us can physically handle.

Bye
Alex

So it's possible that they still believe that XMRV is a chimera. Maybe they see their closely held beliefs being challenged, may even have some cracks in their own mental constructs, and are fighting a desperate last-ditch battle to avoid relinquishing their bigotry. The fight could get ugly.
 

Ash

aka @smashman42 'SortaDerpy' on Twitter
It's gone again, and I stupidly didn't copy it earlier.

But Hillary does state on the website that she does not give permission to repost.

Shelley


Why is Hillary up again down again with this post? The rest of the site is fine so I doubt a server issue.

Legal threat? But you'd think it'd stay down unless she ammended something & they sent a second C&D
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Why is Hillary up again down again with this post? The rest of the site is fine so I doubt a server issue.

Legal threat? But you'd think it'd stay down unless she ammended something & they sent a second C&D

She has made minor edits.
 

Forbin

Senior Member
Messages
966
The motivation seems pretty simple to me. Ten months before the XMRV paper was published in Science, Dr. Reeves published these results...

Results: CFS cases reported significantly higher levels of childhood trauma and psychopathology than controls. Exposure to childhood trauma was associated with 6-fold increased risk for CFS. Sexual abuse, emotional abuse and emotional neglect were most effective in discriminating CFS cases from controls. There was a graded relationship between exposure level and CFS risk.

Childhood trauma and risk for chronic fatigue syndrome: Association with neuroendocrine dysfunction
Heim C, Nater UM, Maloney E, Boneva R, Jones JF, Reeves WC
Archives of General Psychiatry 2009; Vol. 66 (1): 72-80.



How can he square that with a retrovirus?
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
My sister has CFS, was diagnosed in late 80s. She now rejects any association with it. She moved from CFs to depression to now dysautonomia in her search. When I mention CFS and XMRV, she brushes it off and says she doesn't care until something is proved. She went through the EBV thing, and every claim afterward. I tried to tell her that much more is known now. But we don't get into more detail except how each of us are doing. It is like the label CFS did nothing for her but bring her frustration. So she doesn't want to go there again.

Tina
 

cfsme23

Senior Member
Messages
129
Location
England
PLEASE PLEASE PLEASE may anyone who made a copy of the post (before it went down) PM me it as I have potentially got a very prominent British journalist interested in the blood supply aspect of XMRV and wanted to point him in the direction of the post by Hilary by means of a bit of background as to what's happening Stateside. Could be great for all of us if someone could get in touch, many thanks :)
 

dsdmom

Senior Member
Messages
397
Could someone PM be a copy as well? I read it before but didn't think it would come down so didn't copy it. I'm trying to get together an email to 60 minutes and would like to have another look at it.
Thanks!
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Not trying to be a jerk, but I don't think it's particularly ethical to be passing around an article that the author obviously doesn't want public. Strictly speaking, it's usually not even ethical (or legal) when it is published because of copyright reasons. I know I wouldn't like to find people passing around something I wrote if I took it down for whatever reason/s. I would suggest just waiting for it to be reposted, and then linking people to the article. JMHO.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
While I disclaim any inside knowledge of the CDC group we keep discussing, I've seen this dysfunctional research group syndrome before. By themselves, the individuals involved may be sharper than I've given them credit for being. Put them together in a way which reinforces their defects, and they will act like self-defeating imbeciles. When people are genuinely unable to recognize major logical defects in a plan, you won't find an isolated example; there will be a pattern of repeated behavior.

Go back to the study which produced the cohort used in the recent paper. Consider the possibility that the empirical definition may be devoid of meaning. Deduce consequences of this idea before you look at the data. Now, ask how those diagnostic criteria were validated. You find a short circuit in thinking. Now, look at the reported data. Do they show the stable characteristics of a well-defined category? Do they show evidence of reproducibility? Quite the contrary; they match the hypothetical characteristics deduced above.

Now, consider the laboratory assay in the recent paper. Does the design, implementation and validation of the assay show the same abstract pattern of defects? Are the controls adjusted to the test rather than adjusting the test to meet external criteria? This is what happens in research if you get used to taking the easy way out.

This is also characteristic of a kind of 'waterfall' paradigm of planning, design, implementation and testing beloved by administrators. Schedules and budgets are predicated on getting each stage right, perhaps with little arrows showing the intended direction of progress. Loops showing reverse movement when validation fails are simply omitted. When such a situation appears, throwing schedules and budgets off, the temptation to short circuit the loop by moving the goalposts is well nigh irresistible.

This is where Cort's observation that the people involved believe they are right comes in. If they are unshaken in the belief they really know the true answers, fudging the means by which they find it may not greatly bother them. This is the path to perdition.

A second characteristic here has to do with organizational politics. The phrase 'all politics is local' fits. People in large, unwieldy organizations spend the majority of the time fighting for funding, attempting to control other groups, or simply trying to avoid control. Disputes become highly personal fights over control. Any concerns beyond this narrow scope are likely to distract you at a critical moment when an adversary is watching. The view from on high, or from outside, or from some plateau of objective truth is irrelevant to day-to-day survival.

You go from fighting to control people, money and equipment to controlling problem definitions, then testing definitions, controlling procedures, and so on, until controlling data from the objective world seems perfectly natural. At that point you are truly lost.


Anciendaze, I think you have captured the dynamics very well. It was like that in a large bureaucracy-sized HMO where I worked as a systems analyst, before I got sick. How they love their process maps and arrows!

I twice caught major grief from company vice presidents when I refused to fudge data on quality control metrics. Even the coworkers who respected my ethics thought I was a little crazy not to just go with the program.

"Dysfunctional research group syndrome" describes it perfectly. Once that kind of culture takes hold, it's about as easy as kudzu to eradicate, and even more destructive.

To me, your hypothesis seems more likely than a true conspiracy. A conspiracy of that magnitude would require greater organizational ability than I credit them with. A culture of incompetence makes more sense.
 

pollycbr125

Senior Member
Messages
353
Location
yorkshire
Not trying to be a jerk, but I don't think it's particularly ethical to be passing around an article that the author obviously doesn't want public. Strictly speaking, it's usually not even ethical (or legal) when it is published because of copyright reasons. I know I wouldn't like to find people passing around something I wrote if I took it down for whatever reason/s. I would suggest just waiting for it to be reposted, and then linking people to the article. JMHO.

your absolutely right Hilary makes it absolutely clear the article is copyright and I think we should respect that. I am more worried why the post is down I have never known this with Hlarys blog
 

Wayne

Senior Member
Messages
4,307
Location
Ashland, Oregon
Not trying to be a jerk, but I don't think it's particularly ethical to be passing around an article that the author obviously doesn't want public. Strictly speaking, it's usually not even ethical (or legal) when it is published because of copyright reasons. I know I wouldn't like to find people passing around something I wrote if I took it down for whatever reason/s. I would suggest just waiting for it to be reposted, and then linking people to the article. JMHO.

I agree. Hillary is a prolific writer, and we can all be assured we will get her "most recent thoughts" when she's ready to publish them. I think a little patience is in order.
 

Levi

Senior Member
Messages
188
Men who do things to goats . . .

Its the same article, but its longer now. She punched up a lot of details and support for her comments. It reads better now. She also now soft-pedals the Dr. Fauci connection and says he's a decider "at least in part" to spiking of the Alter paper. She also now mentions that her employer is telling her to shut up about this particular subject.

Being the cynical lawyer type, I have been trying to follow the money here. When it comes to Dr. Fauci, he's all about controlling large sums of money:

http://www.aegis.com/news/wsj/2005/WJ051201.html

What if, in all these megabuck expeditures by the NIH controlled by Fauci, research into bioterrorism/recombinant genetics/and or gene therapy accidently unleashed a new human retrovirus into the population? And the CDC knew about it after the fact and had even funded the research that went haywire?

http://www.genetherapynet.com/viral-vectors/retroviruses.html

Sure, its a far out conspiracy theory, but we are trying to explain the unexplainable here. Now we are talking cover-up and vast sums of liability, money and reputations at stake. Do you think China's initial attempt to cover-up SARS was weird? What if they had created that pathogen in a lab? How far would they have gone THEN to cover it up?

For those that have read it before, is this it & how much has it changed?
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
She also now mentions that her employer is telling her to shut up about this particular subject.

That is exactly what she is NOT saying.

And because we live in a democracy, I am able to publish my observations and opinions (through the magic of the Internet), without being censored or suppressed or forced to issue statements that have been written for me by government administrators or their public relations staffs, nor am I being told by powerful people who are also my employers that I cannot publish my words.