Is XMRV a New Paradigm for CFS?

gracenote

All shall be well . . .
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Is XMRV a New Paradigm for CFS?
The Role of the Scientific Consensus Process in the XMRV Debate


A guest editorial from the CFIDS Association, April 7, 2010

CFIDS Association: This month we introduce a new periodic feature, a guest editorial on a research topic of high interest to our readers. Kurt Rowley, PhD, shares his view about the formal and informal process of achieving consensus in his essay. In it he represents his own views and not those of any other organization.
Please follow the link above for the rest of the article.

Is XMRV a New Paradigm for CFS?
The Role of the Scientific Consensus Process in the XMRV Debate

Kurt Rowley, Ph.D.
Independent Researcher & Writer

In Thomas Kuhn's famous book The Structure of Scientific Revolutions [1] the term 'paradigm shift' was defined as a change in the basic assumptions and explanations for an entire field of science. The discovery of XMRV by PCR in CFS patient samples reported by Lombardi et al [2] suggests a possible paradigm shift. If the correlation between CFS and XMRV could be validated to the satisfaction of the scientific community and a causal model identified and proven, this would be a game changer in the science of CFS. The XMRV discovery then would have a dramatic effect on not only treatment options but also on the politics of CFS. These points have all been well noted by CFS researchers, patients, and advocacy groups. However early confirmation attempts have failed to find XMRV in several patient groups [3-5], and many more studies are reportedly in progress. The debate over who is right has begun both among scientists and the CFS community. How will this all play out, how and when will patients have an answer about XMRV? Where will the answers come from? In order to address those questions, I believe some background in the scientific consensus process is helpful, as only the science, and not the political or medical needs of any faction in the debate, will determine the validity of the XMRV hypothesis for CFS.
 
R

Robin

Guest
Proving retroviral involvement in these and other conditions has been very slow and deliberate, including hundreds of studies, with most retroviral hunts being eventual failures, often due to interference from endogenous retrovirus contaminants
Sounds like Kurt to me! ;):tear:

Great job, Kurt! I didn't know about the NIH consensus process. That's very interesting!
 
G

Gerwyn

Guest
The use of statins to prevent Mi,s was proven in one landmark study.

Kuhns work was succesfully challenged and Kuhn retracted or clarified his earlier statements.

A visit to the stanford encyclopedia of Phillosophy would be useful.

The work of Watson and Crick is another example of a" paragidm shift" arising from one paper

.Science is fact driven not consensus driven

.Paragidm shift is actually a term applied to positivism which ceased to be the phillosophy underlying science about 60 years ago.

I,m suprised to see such an archaic term being used by a modern scientist.

I,m even more suprised to see Kuhns work portrayed as fact when it is an unsubstatiated opinion which was challenged and refuted by literally hundreds of scientists at the time.

His work did unfortunately allow the development of qualitative investigations that the psychos are so fond of.

Kuhns work is often used as a basis for constructing some argument or other ususually by people who have a political or some other vested interest in promoting some viewpoint or other




student comments on course designed by Kurt Rowley

"Really liked the combination of CBT training and in-class training."

"The ability to work on a team that acted much as an integrated product team might [was particularly helpful]. Interaction was wonderful."

"Bottom line—fun and interesting."

"This is the best CBT yet."

"A great course! This is the first time in 20 years of service that a course actually met (and in this case exceeded) my expectation."

MORE INFORMATION

Kurt Rowley, Ph.D., Senior Consultant

Dr. Rowley is an instructional designer and researcher with a background in information technology and educational research. Dr. Rowley has worked as an IT consultant, built up a small software business, and spent several years as an adjunct college instructor teaching computer programming and business courses. He holds a Ph.D. in Instructional Systems from Florida State University (1995).

Dr. Rowley worked for three years as a research associate of the U.S. Air Force Research Laboratory at Brooks AFB, Texas, where he designed and tested a computer-based tutoring system to teach writing skills. The tutoring system produced significant performance gains among high school students, and has been used by the Department of Labor's Job Corps to help student prepare for the GED exam. The system was marketed to schools for several years by Carnegie Learning Corporation and Apangea Learning (Pittsburgh, PA).

After his work for the Air Force, Dr. Rowley was the lead instructional designer for Defense Acquisition University (DAU) for the development of a blended online-onsite Intermediate Systems Acquisition Course (Ft. Belvoir, Virginia). The course utilized an innovative 'story-based' instructional strategy and became an example of blended e-learning in a large, high-stakes course (see an article about the course). Over 40,000 military acquisition professionals have successfully completed this certification course, as of 2008.

After completing his work on the ISAC course for DAU, Dr. Rowley won two Small Business Innovation Research awards from the Office of Naval Research, totaling $850,000. The study identified effective methods for helping novice instructional designers. The project produced a software product that supports design teams through the use of job aids, worksheets, advice, instructional modules, a design database, and a rapid prototype and evaluation system for emerging designs.

Currently Dr. Rowley works as a free lance designer on several projects including the definition of a Bachelor's degree program for instructional design, a math novel for secondary schooling, and a crime prevention course for school administrators.

Would it be too much to ask that the CFIDS actually use "essays" by people qualified in the life sciences who actually do understand the processes involved in this area.perhaps then we would not get nonsence like "hundreds" of studies needed to prove that a virus is causative of a disease! this is what you end up with when computer programmers pose as scientists








Please follow the link above for the rest of the article.[/QUOTE]
 
K

_Kim_

Guest
student comments on course designed by Kurt Rowley

"Really liked the combination of CBT training and in-class training."


FWI - before anyone gets their panties in a wad, CBT appears to stand for Computer Based Tutoring, not Cognitive Behavioral Therapy.
 
G

Gerwyn

Guest
FWI - before anyone gets their panties in a wad, CBT appears to stand for Computer Based Tutoring, not Cognitive Behavioral Therapy.
• rt Rowley holds a PHD in instructional systems.
• He has never been a researcher in any of the natural sciences,life sciences or indeed even the Social Sciences
http://www.kurtrowleyphd.com/
• He has no first hand knowledge of research processes and methods in any of these areas

• Considering the number of experienced and gifted scientists working in the field of biomedical research into ME/cfs why did the CFIDS ask this person to write an essay connected with XMRV
• Why did they not ask someone who actually holds biomedical qualifications(preferably a virologist) to write this essay.
• I invite you to draw your own conclusions
• The work of ThomasKuhn is often cited by people who wish to claim that their argument has some kind of scientific validity when it does not I am not referring to Kurt
• Kuhn,s work was in fact refuted and he later retracted or clarified his statements(Stanford encyclopedia of Phillosophy)
• Paragidm shift is a metaphor coined by Kuhn to describe positivism a philosophy of science that ended 60 years ago.It has no objective meaning
• It does not take hundreds of studies to confirm that a virus is causative of a disease.Koch actually proved causation in one experiment.A virologist would know that and not say any thing so inconsistent with the history of the field
 
G

Gerwyn

Guest
Everything I learned about life I learned in Kindergarten, not in grad school! In kindergarten we learned to compliment people when they work hard, and to ignore people when they're being mean. In grad school we learned to stomp on people when they work hard and reward people for being mean.

Kurt is one of our own. I may not agree with him more than 2% of the time. But as a member of a group of people who have enough difficulty in their lives I think a compliment for work well done is in order.

The scenario that Kurt paints in this article is possible with our disease because of the decades of politics attached to it as well as the problems with the "cohorts" that have been thrown together over the years. Consider HIV, it is more a ruling of consensus than of hard fact. Until some one can show the pathogenisis from start to finish it will remain a consensus in science which will always allow the "denialist" entrance to the arena. It's not a bad cautionary tale.

Yes there are other possibilities, ways that this can play out. As a member of a community where suicide is one of the leading causes of death I prefer to emphasis the positive as much as truth allows when I post. I also trust that most members of our community are capable of understanding that what they read isn't the 'golden truth' on either side, yet. We're all grown ups as Adam points out to us often. (grins)

As adults I think a balanced approach may work better for the community. I know that Kurt is outside of the majority opinion on the forums but the statement above reads more like an attack than a balanced disagreement. Why attack a statement when a reasonable counter-statement works just as well? To often much of what we have to say turns into an ugly argument when it's not necessary. Gerwyn you write some of the most well reasoned (notice I didn't say written, (Big grins)) scientific arguments on this forum. Just keep that up and people will continue to listen when you write. Leave the attacks to your cat.
not meant as an attack
 

oerganix

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Everything I learned about life I learned in Kindergarten, not in grad school! In kindergarten we learned to compliment people when they work hard, and to ignore people when they're being mean. In grad school we learned to stomp on people when they work hard and reward people for being mean.

Kurt is one of our own. I may not agree with him more than 2% of the time. But as a member of a group of people who have enough difficulty in their lives I think a compliment for work well done is in order.

The scenario that Kurt paints in this article is possible with our disease because of the decades of politics attached to it as well as the problems with the "cohorts" that have been thrown together over the years. Consider HIV, it is more a ruling of consensus than of hard fact. Until some one can show the pathogenisis from start to finish it will remain a consensus in science which will always allow the "denialist" entrance to the arena. It's not a bad cautionary tale.

Yes there are other possibilities, ways that this can play out. As a member of a community where suicide is one of the leading causes of death I prefer to emphasis the positive as much as truth allows when I post. I also trust that most members of our community are capable of understanding that what they read isn't the 'golden truth' on either side, yet. We're all grown ups as Adam points out to us often. (grins)

As adults I think a balanced approach may work better for the community. I know that Kurt is outside of the majority opinion on the forums but the statement above reads more like an attack than a balanced disagreement. Why attack a statement when a reasonable counter-statement works just as well? To often much of what we have to say turns into an ugly argument when it's not necessary. Gerwyn you write some of the most well reasoned (notice I didn't say written, (Big grins)) scientific arguments on this forum. Just keep that up and people will continue to listen when you write. Leave the attacks to your cat.
Gerwyn is also "one of our own" and I didn't read any attack into his post. Presumably, the purported employees of CAA are also "our own" since they, I've read here, are forum members. Are we also thus prohibited from noting that they seem to have a different agenda from what most of us think is good for us?

Actually, George, your post seemed more like an attack on Gerwyn, to me. Shoot the messenger? I am pleased to have a little more background info on Kurt, as I have long noticed that when questioned about his background and education, he sort of waltzed around the fact that he is not life-science educated, while putting forth the CAA party line on just about everything. Now we know at least a part of why he is so supportive of CAA. I'm not saying he has no right to be their spokesperson, just that I'd like transparency about it.

Gerywn said "Would it be too much to ask that the CFIDS actually use "essays" by people qualified in the life sciences who actually do understand the processes involved in this area.perhaps then we would not get nonsence like "hundreds" of studies needed to prove that a virus is causative of a disease! this is what you end up with when computer programmers pose as scientists"

This seems to be a very valid criticism to me. The first reference used in Kurt's article is a book from the 1960's. Gerwyn says those theories have been refuted and recanted by the author. If that is true, then why use it to support your point of view, unless you, the writer, also have a political agenda?

You may have learned to be "nice" in kindergarten, but neither you nor anyone else learned microbiology in kindergarten. I, for one, appreciate what virologists and other scientists have learned in grad school.

George, you want a balanced approach? Like having the Sharpe GET/CBT materials on CAA, to balance the work of Jason or the Drs Light? IMO, Gerwyn has just provided some balance here. He also gave an example of why it doesn't always take decades to get scientists to change their minds. Balance, right?

I understand why many people like to be associated with a "celebrity". I think this worshipful attitude towards celebrity, whether it's congresspersons, public officials or authors, is a large part of the problem with CAA. Making nice with people in power gives them the illusion they share the power. It's pretty plain to me, we don't. As Hillary Johnson said, it's stopped being about us. It's now about them.

Along with reading Kurt's cautionary tale, I also read the CAAs new report on their lobbying effort to Congress. Almost fell asleep, it was so couched in doublespeak, so lacking in vision or passion, so.....go-along, get-along, don't rock the boat, let's all be friends...ineffective.

The CAAs attitude, and Kurt's "essay", both espouse the theory that this whole thing has to be a long drawn out affair, upholding the status quo and not ruffling any feathers. I simply don't agree that that is the best way, nor that is is inevitable. It seems like spin control to me.

Remember the saying that one definition of insanity is doing the same thing over and over while expecting different results? This is really what the CAA espouses in essays like this. (Yeah, I know, they say it doesn't reflect their opinion, yadayadayada...but they DID choose to include it) Once again, they are trying to straddle the fence and CYA.
 
G

George

Guest
Please excuse my insanity. I don't know what I was thinking. And accept my most humble apologies all around. The post has been deleted.
 
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The resistance to change is not doubt of the new theory, it is a desire to not lose the old beliefs.

When you accept something new, you must give up the old. The old is comfortable, it is familiar and it has become a part of who you are. Giving up old beliefs is like losing a part of yourself. It is a death, a loss.

Tina
 

gracenote

All shall be well . . .
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Kurt,

I think you did a great job and congratulate you on your article.

But I disagree with your premise.

I don't think "consensus" is the way XMRV and ME/CFS will play out. I don't see how pharmaceutical companies will wait for the "science" to be convincing if they find an anti-retroviral that holds promise. I don't think the doctors who have been working so long and hard to find relief for their patients will wait for years for all the studies to be in place. And when you say "consensus," who or what organization are you referring to?

And Gerwyn I don't have the information you do, so I still like the term "paradigm shift."

But here again, I disagree with you, Kurt. I don't think there has been a paradigm regarding chronic fatigue syndrome unless you look into a particular discipline like psychology where there may be more agreement about an explanatory model. But just looking at the whole field of chronic fatigue syndrome will leave you with no idea of what the prevailing paradigm is. Look at the names we use: ME, CFS, CFiDS, ME/CFS. Look at the very different models presented by Cheney, Pall, Rich van K, Myhill, Marshall, Gupta, Teitelbaum, Reeves, etc., etc. Look at the contradictory protocols offered towards recovery, and the protocols used by those few who have recovered.

What's been interesting to me is that a retrovirus seems to make sense to some of our most respected ME/CFS doctors: Peterson, Cheney, Klimas, Bell. And it seems to make sense to so many, many of us who have struggled and lived with this confounding disease for so long.

I think ME/CFS is a disease waiting for a paradigm. I don't think it will be a consensus in research studies that will bring clarification. It will be large numbers of patients getting better and staying better that will finally bring consensus.

Many, if not most, of us cannot afford to wait for a slow, methodical process to take place. We will research as best we can, trust the few voices that have been in the fight for a very long time, and then at some point, come to our own conclusions, just like we've had to do all along.

Once again, Kurt, I want to commend you for writing a well thought out article. Just now, trying to put my thoughts in words, reminds me how very difficult that is. I respect the clarity with which you expressed your view.
 

kurt

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For the record, that article was about the consensus process and XMRV, not about Kuhn's work. That should be obvious.
Also, CBT = Computer based training. Has nothing whatsoever to do with cognitive behavioral therapy. And I have designed and run large-scale studies using human subjects and am qualified to write an editorial essay on the topic of a consensus process. In fact, I also had that article reviewed by a Ph.D. biological researcher who had no problem whatsoever with what I said.

I have not idea why gerwyn continues to attack me personally. This was a very mean-spirited personal attack, despite his words to the contrary. This is an open forum and all opinions are welcome, but not personal attacks. None of my personal information has anything whatsoever to do with the content of my opinion editorial.

And yes, many times hundreds of studies have been required to reach a consensus about viral infection and treatment. There may be some exceptions, some cases where one landmark study made a big difference, but even then many confirmation studies are required. That does not invalidate the importance for us of a consensus process, I believe the lack of consensus is one of the major reasons we continue to be so horribly maligned.
 
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I find it highly disingenuous that he flashes his Ph.D. around without telling what it is actually in, giving readers the false impression that he actually knows what he is talking about. In addition, the apparent secret association of this forum and its administrators with the CAA is becoming more and more blatant and disturbing.
 

kurt

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I find it highly disingenuous that he flashes his Ph.D. around without telling what it is actually in, giving readers the false impression that he actually knows what he is talking about. In addition, the apparent secret association of this forum and its administrators with the CAA is becoming more and more blatant and disturbing.
Secret association? The CAA asked me to write a one-time guest editorial on a topic I have studied, posted about and that I feel strongly about. That is the extent of any association. Writing is my contribution to CAA since I have no funds. I am a regular CFS patient like many others here.

There is nothing disingenuous in my article or my posting here, I just happen to have my own independent views, which ARE based in part on my experiences as a researcher. What's wrong with that?

Everyone here is entitled to express their views without these ad hominim attacks. Please stop posting about me personally.
 

omerbasket

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I find it highly disingenuous that he flashes his Ph.D. around without telling what it is actually in, giving readers the false impression that he actually knows what he is talking about.
If that's really what happens, I totaly agree with you. In my country, Israel, There is some man who has a website and also appeared on TV regarding a medical issue. His website tries to cell a natural supplement, and many times in his site he writes "Dr." before writing his name. I didn't found any statement in his site, that he is a doctor in the economy field - a fact which I found after googling his name. He says that he learned from some doctors and I think from written material - and it's even possible that his pill really works (he took ingredients that has been shown scientifically to fight against viruses). But writing in a site for natural medication "Dr.", "Dr.", "Dr." when you're an economic doctor - That's misleading, and no, I don't think it was done innocently.

If that's the case here - then I think this is horrible.

Anyway, Kurt. Two things:
1) Consensus? In ME/CFS? Sure - all of us would like that. It would make an ME/CFS sufferer life much easier (If everyone would see it as a biological illnness). Unfortunately, there are people out there that for some reasons, many of them, I believe, are not innocent at all, don't want to tell that they agree that ME/CFS is a biological illnness. So - should the ME/CFS community wait for their approval - or should the ME/CFS community try to find the truth - no matter who says he believes it (As Gerwyn said - the aim is to find facts - and I would say the truth - not consensus - which, as I said, would probably make things easier, but would also probably be very hard if not imppossible to get).

2) Hunderds of studies? Perhaps people here sould wait some 200 years before they die? I think a few large, very good studies should definitely be enough - and perhaps it's even more than enough.
Science should be done in a hurry. it should be done well, but we would simply lose, I believe, if every time we would wait for it to be excellent. How many years should people suffer while good studies are out there suggeting a good medication for their situation?

One question, Kurt: You wrote in this forum a lot of messages regarding scientific issues. I was sure you are a medical scientists. Are you? If not - how did you get your knowledge (I do recognize that you don't HAVE to be a scientist in order to understand science)?

Gerwyn - I thank you for what you write here. The truth is important.
 

oerganix

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Please excuse my insanity. I don't know what I was thinking. And accept my most humble apologies all around. The post has been deleted.
George, we're just having a difference of opinion here. Where the heck are you?

I've often enjoyed your posts and you have every right to have a different opinion from mine. I didn't say you are/were insane...just maybe the CAAs approach.

Come on back here, you hear?