Is XMRV a New Paradigm for CFS?

fingers

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i thought that this would be sn opportune moment to summarise where we are with XMRV at the moment as the situation appears to be getting quite confused:

XMRV has been detected in 67%(later revised to>90%) of patients examined who fullfilled the Canadian Consensus document diagnostic criterea.it has not been dtected in patients who did not.

no need for 100,s of studies or convoluted slow consensus processes(which are not part of either scientific argument or method) just a nice simple fact
Ladies & gentlemen, the Kurt & Gerwyn show is in recess for 24 hours (or more maybe?).

Fear not, the entertainment probably continues somewhere else on this site (anyone found it?).

re above, Gerwyn, is that fact? Some say not. Seems it has yet to be corroborated.

Though I do agree, it shouldn't take so long to confirm or disprove it.....but it is.

Gerwyn, your "dispute" with Kurt seems to centre on whether he is qualified to comment or not. Well, what a sad world it will be if we all have to have certain letters after our name in order to comment on certain things. Like you have to be Alex Fergusson (M o MU) to judge whether Wayne Rooney was really injured or not.

Brainpower, creativity, logic, collaboration....that's what we need. If you, Gerwyn, Kurt , and all the other brains on this forum (present company EXCLUDED) could get your heads together CONSTRUCTIVELY, then we might make some progress. We can't wait for the research community to do it, they have their own agendas, not ours.

Gather that energy and that intelligence. Direct it. Make it work. Please.

F
 

Stuart

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Science does not run by consensus, it works by accepted working models, some controversial models, and disruptive ideas.

Prevalent ideas are structured into working models and supported by groups who have similar views (Here there are authority structures, academic and institutional). Theoretical, experimental, and applied groups work to prove, disprove, or expand upon these models. Individuals with novel ideas create a disruptive force to all models, if the idea proves useful, a new model or modification to existing models may soon be needed for them to remain relevant.

There is no cookbook or linear process in science, it is not authoritarian nor is it deterministic. Real science is messy; change often comes from unexpected or even unrelated sources. The attempt to impose Authority can be counterproductive and is often used to support ideology or special (often financial) interests.

A good primer on science and the on the real scientific process can be seen here: http://undsci.berkeley.edu/article/howscienceworks_01 (Easy, Fun Version! It is like a CBT [computer based training], but there is no test. I promise!).

In regards to medicine there is a difference between research/theory and practice/application. While both theory and practice move forward with a great deal of unknowns and variables unaccounted for, in practice there is a tension between doing what is pragmatic and what is ideal. In the most desperate cases, novel approaches are tried with what might be called an informed hunch. On the personal basis, both physician and patient understand the need for individuation (exceptions to standard model).

As a human enterprise, ego and material interests often interfere with our ideals of how things work. Greed, Corruption, Ignorance, and Incompetence are as present in this endeavor as any other. We all have experienced professionals who are either competent or not, on a mission - or merely running a business; those who are out to solve a problem - or just stay employed or maximize earnings.

For many of us (at least in the U.S.) our education in science and history is poor. We need a better basis in both and in critical thinking skills (not test taking skills) to make good decisions and discern between claims (especially by some claimed experts). For an interesting read on scientific method, theory, history, debate, evidence, and adjudication see: www.its.caltech.edu/~dg/HowScien.pdf (a bit denser read, no pretty pictures!).


We need to understand now more than ever when our future is determined by what we choose to believe about science, technology and what claims are made; especially from those with financial interests at stake.


Think for yourself!

Or be subject to the tyranny of


 

Sing

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Ladies & gentlemen, the Kurt & Gerwyn show is in recess for 24 hours (or more maybe?).

Fear not, the entertainment probably continues somewhere else on this site (anyone found it?).

re above, Gerwyn, is that fact? Some say not. Seems it has yet to be corroborated.

Though I do agree, it shouldn't take so long to confirm or disprove it.....but it is.

Gerwyn, your "dispute" with Kurt seems to centre on whether he is qualified to comment or not. Well, what a sad world it will be if we all have to have certain letters after our name in order to comment on certain things. Like you have to be Alex Fergusson (M o MU) to judge whether Wayne Rooney was really injured or not.

Brainpower, creativity, logic, collaboration....that's what we need. If you, Gerwyn, Kurt , and all the other brains on this forum (present company EXCLUDED) could get your heads together CONSTRUCTIVELY, then we might make some progress. We can't wait for the research community to do it, they have their own agendas, not ours.

Gather that energy and that intelligence. Direct it. Make it work. Please.

F
My feelings exactly!

Thank you!

Sing
 
G

Gerwyn

Guest
Ladies & gentlemen, the Kurt & Gerwyn show is in recess for 24 hours (or more maybe?).

Fear not, the entertainment probably continues somewhere else on this site (anyone found it?).

re above, Gerwyn, is that fact? Some say not. Seems it has yet to be corroborated.

xmrv has been detected in patients who fullfill the ccd diagnostic criterea but not in patients who dont that is absolute fact

What i stated about XMRV is fact you are welcome to attempt to disprove it as are others. I frequently dispute the comments that Kurt makes.i have never commented about whether he is qualified to make comments.He is perfectly entitled to make whatever comments he chooses to.If I disagree with the factual content of his claims or observations then I,in turn, am perfectly entitled to rebutt those claims or observations.I make no apologies for doing so.people can then make up their own minds about the relative strenghs of our two,often conflicting,positions.
 

Sing

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Fingers, I don't know Wayne Rooney. I don't know a lot of stuff. But you made your point and I fully agree with this:

"Brainpower, creativity, logic, collaboration....that's what we need. If you, Gerwyn, Kurt , and all the other brains on this forum (present company EXCLUDED) could get your heads together CONSTRUCTIVELY, then we might make some progress. We can't wait for the research community to do it, they have their own agendas, not ours.

Gather that energy and that intelligence. Direct it. Make it work. Please."
 

fingers

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re above, Gerwyn, is that fact? Some say not. Seems it has yet to be corroborated.
Gerwyn
xmrv has been detected in patients who fullfill the ccd diagnostic criterea but not in patients who dont that is absolute fact
How can "patients who fulfill the ccd diagnostic criteria" be equated to "absolute fact" when the diagnosis is subjective? Morning, little Johnnie, do you get PEM? Yes sir! OK, then.

What i stated about XMRV is fact you are welcome to attempt to disprove it as are others.
See above.

I frequently dispute the comments that Kurt makes.i have never commented about whether he is qualified to make comments.He is perfectly entitled to make whatever comments he chooses to.If I disagree with the factual content of his claims or observations then I,in turn, am perfectly entitled to rebutt those claims or observations.I make no apologies for doing so.people can then make up their own minds about the relative strenghs of our two,often conflicting,positions.
So what's all the stuff about what his PhD is in then? Sorry, I must have misunderstood this. The point I would like to make here is that it is often valuable for people from different disciplines to make observations in other fields, as a different perspective is advantageous. My own disciplines are business and computer systems and project management, gained in the school of hard knocks (I studied Geology at UCL too, but didn't learn much there - patently obvious, I know).

The other point I am trying to make is that whilst forum members can make up their own minds, it's counter-productive trying to follow the polemic and point-scoring, when all this intellect and energy could be channelled constructively. What can we do to achieve this?
 

dannybex

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Ladies & gentlemen, the Kurt & Gerwyn show is in recess for 24 hours (or more maybe?).

Fear not, the entertainment probably continues somewhere else on this site (anyone found it?).

re above, Gerwyn, is that fact? Some say not. Seems it has yet to be corroborated.

xmrv has been detected in patients who fullfill the ccd diagnostic criterea but not in patients who dont that is absolute fact
With all due respect Gerwyn, that is not an absolute fact. It was also found in 3.7 percent of controls, which equals about 11.5 million people in the US alone, compared to the estimated 1.5-3 million people with ME/CFS.

What i stated about XMRV is fact you are welcome to attempt to disprove it as are others. I frequently dispute the comments that Kurt makes. i have never commented about whether he is qualified to make comments.
Well...it seems to me you questioned his qualifications in posts #7, #10, #25. ???

Anyway, can we please stop splitting hairs, or should we start another thread just for that? :Retro smile:

Best regards,

Dan
 

dannybex

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The other point I am trying to make is that whilst forum members can make up their own minds, it's counter-productive trying to follow the polemic and point-scoring, when all this intellect and energy could be channelled constructively. What can we do to achieve this?
I agree fingers. Especially since there isn't much 'energy' out here in the first place.

How to acheive this...I don't have the answer to that. Hopefully others will chime in.

d.
 
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Science does not run by consensus, it works by accepted working models, some controversial models, and disruptive ideas.

Prevalent ideas are structured into working models and supported by groups who have similar views (Here there are authority structures, academic and institutional). Theoretical, experimental, and applied groups work to prove, disprove, or expand upon these models. Individuals with novel ideas create a disruptive force to all models, if the idea proves useful, a new model or modification to existing models may soon be needed for them to remain relevant.

There is no “cookbook” or linear process in science, it is not authoritarian nor is it deterministic. Real science is messy; change often comes from unexpected or even unrelated sources. The attempt to impose “Authority” can be counterproductive and is often used to support ideology or special (often financial) interests.

A good primer on science and the on the real scientific process can be seen here: http://undsci.berkeley.edu/article/howscienceworks_01 (Easy, Fun Version! It is like a CBT – [computer based training], but there is no test. I promise!).

In regards to medicine there is a difference between research/theory and practice/application. While both theory and practice move forward with a great deal of unknowns and variables unaccounted for, in practice there is a tension between doing what is pragmatic and what is ideal. In the most desperate cases, novel approaches are tried with what might be called an informed hunch. On the personal basis, both physician and patient understand the need for individuation (exceptions to standard model).

As a human enterprise, ego and material interests often interfere with our ideals of how things work. Greed, Corruption, Ignorance, and Incompetence are as present in this endeavor as any other. We all have experienced professionals who are either competent or not, on a mission - or merely running a business; those who are out to solve a problem - or just stay employed or maximize earnings.

For many of us (at least in the U.S.) our education in science and history is poor. We need a better basis in both and in critical thinking skills (not test taking skills) to make good decisions and discern between claims (especially by some claimed ‘experts’). For an interesting read on scientific method, theory, history, debate, evidence, and adjudication see: www.its.caltech.edu/~dg/HowScien.pdf (a bit denser read, no pretty pictures!).


We need to understand now more than ever when our future is determined by what we choose to believe about science, technology and what claims are made; especially from those with financial interests at stake.


Think for yourself!

Or be subject to the tyranny of…


Very nice summing up Stuart of our situation. Nice resources too. Thank you!

And of course, NO discussion on the problems of claiming scientific authority would be complete without Cartman in a police costume.
 

bel canto

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I think all these points are important. It seems to me there are parallel processes here: formal scientific consensus (such as the NIH process Kurt described in his article) and common medical consensus (for lack of a better term). Common medical consensus might be the standard operating procedure doctors use in evaluating and treating patients with a particular illness, etc. We need both, because the formal process will move very slooooooowly.


Scientific consensus defined as the NIH process is a contradiction in terms, although I understand the distinction you're trying to make. Medical consensus will usually be based on the scientific evidence available, as well as doctors' own experiences in treating their patients.

What Kurt describes seems pretty clear - what "the powers that be" ie., government agencies, medical insurance companies, disability insurance companies, etc. - decide the "consensus" should be. To date that has been to mostly deny that cfids is a biologically based disease. So we all know that going to cfs specialist doctors, for the most part, now requires large sums of our own money for testing and treatment. And that "disability" claims based on cfids are very difficult to win.

Kurt's essay almost reads like a warning that, regardless of what the scientific community believes, it could take years for the groups mentioned above to agree and to be willing to shoulder the costs.

Too bad that the cost of human suffering doesn't make it into that concensus.
 
G

Gerwyn

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How can "patients who fulfill the ccd diagnostic criteria" be equated to "absolute fact" when the diagnosis is subjective? Morning, little Johnnie, do you get PEM? Yes sir! OK, then.

See above.



So what's all the stuff about what his PhD is in then? Sorry, I must have misunderstood this. The point I would like to make here is that it is often valuable for people from different disciplines to make observations in other fields, as a different perspective is advantageous. My own disciplines are business and computer systems and project management, gained in the school of hard knocks (I studied Geology at UCL too, but didn't learn much there - patently obvious, I know).

The other point I am trying to make is that whilst forum members can make up their own minds, it's counter-productive trying to follow the polemic and point-scoring, when all this intellect and energy could be channelled constructively. What can we do to achieve this?
hi Fingers
I take your point
However fullfilling the ccd critera involves a lot more than that.That they did fullfill the critera is absolute fact.Yes you are quite right it can be useful for people from other fields to give an opinion.it is however difficult for them to express an informed opinion about specialised proceedures within that field that they have no knowledge of. If someone makes a comment about matters in my field which I know to be incorrect what do you suggest I do?
If you look at the history of our exchanges you will see that Kurt riaised the issue of expertise not me.if someone purports to make authoritative statements about a general scientific consensus process when I know there is no such thing and purports to make authoritative statements about biomedical matters is his background not relevant?

I have no problem with kurt on a personal level but as a trained scientist I have always been taught to challenge factual errors and opinion posing as fact.I,m sorry that members feel that I have been engaging in polemic point scoring but that was never my intention
 
K

Knackered

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Can't please everyone Gerwyn. I'm sure many more people appreciate your posts than people who do not.
 

bel canto

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Gerwyn, I also appreciate your posts, and support your efforts to correct erroneous information. As well as pointing out what is speculation. Particularly when that speculation is done without regard to the actual science and by someone without a scientific background. I personally believe that Kurt has the right to say whatever he wants, but I will absolutely defend the rights of those who challenge the basis of what he says.

I've learned a great deal from your explanations. Thank you.
 
G

Gerwyn

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With all due respect Gerwyn, that is not an absolute fact. It was also found in 3.7 percent of controls, which equals about 11.5 million people in the US alone, compared to the estimated 1.5-3 million people with ME/CFS.



Well...it seems to me you questioned his qualifications in posts #7, #10, #25. ???

Anyway, can we please stop splitting hairs, or should we start another thread just for that? :Retro smile:

Best regards,

Dan
Hi Danny,
i take your point .i should have prefixed my statement.The term patient was not clear enough.Thank you for pointing that out.In medicine the fact that a patient fits a dianostic criterea for a disease is an absolute one.The fact that patients fitted the CCD critrea for diagnosis in the Science study is asolute as well. My view on matters is as follows:

While we" inhabit" a forum we also serve as a focus for many thousands of vulnerable people desperately seeking information

I therefore feel that if we discuss matters appertaining to science that information should either be factual or if speculative opinion should be clearly stated as such.

A case in point would be the Herv issue.

There is no evidence that a Herv is infectious or that one can cause pathology or be activated in the absence of a viral assault apart from possibly in certain autoimmune condiions where the jury is still out

Hervs are part of our intrisic defence system which has evolved to combat retroviral infections.

Herv activity therefore would be a strong sign of exogenous retroviral infection and not the fact that the HERV is involved in the pathenogenesis,quite the contrary infact.

Viral infections generally have the effect of affecting the mechanisms which keep inserted viruses latent.While HERVs are not replicative herv transcription can be activated and herv proteins produced

.Yet the "theory" that HERVs could be causative in ME is repeated ad nausiem .

I feel a moral duty to point out that theory is not consistant with any scientific observations or current knowlege regarding HERV activity in living human beings.

I am truly sorry if people percieve that approach of seperating fact and speculation to be polemic point scoring but that is not my intention
 

fingers

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hi Fingers
I take your point
However fullfilling the ccd critera involves a lot more than that.That they did fullfill the critera is absolute fact.Yes you are quite right it can be useful for people from other fields to give an opinion.it is however difficult for them to express an informed opinion about specialised proceedures within that field that they have no knowledge of. If someone makes a comment about matters in my field which I know to be incorrect what do you suggest I do?
If you look at the history of our exchanges you will see that Kurt riaised the issue of expertise not me.if someone purports to make authoritative statements about a general scientific consensus process when I know there is no such thing and purports to make authoritative statements about biomedical matters is his background not relevant?

I have no problem with kurt on a personal level but as a trained scientist I have always been taught to challenge factual errors and opinion posing as fact.I,m sorry that members feel that I have been engaging in polemic point scoring but that was never my intention
I apologise, Gerwyn, the phrase I used was a bit strong and unfair.

Please don't stop making your excellent points in your own straightforward and direct style. I know you don't mean things personally, and neither do I, it just comes across that way sometimes within this limited communication medium. (I think) we all here have the same objectives.

All the best.
Steve
 

ukxmrv

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Gerwyn,

I don't think that either you or Kurt are engaged in "polemic point scoring" or are doing anything else than an honest attempt to tackle this from different angles.

Rather than being entertained by both of you, I am learning a great deal and am very grateful for your attempts to keep this going.
 
G

Gerwyn

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I apologise, Gerwyn, the phrase I used was a bit strong and unfair.

Please don't stop making your excellent points in your own straightforward and direct style. I know you don't mean things personally, and neither do I, it just comes across that way sometimes within this limited communication medium. (I think) we all here have the same objectives.

All the best.
Steve
No worries fingers we are on the same side.That i,m convinced of.I just worry sometimes that things are not clear enough for people who are as conitively disabled as I was.

best wishes
Gerwyn
 

Adam

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I too have a learned a lot from Gerwyn and Kurt. We should do everything we can to continue to support their exchanges. I also think, even those of us like me who have no scientific background, are able to distinguish between opinion and fact. However, it does help when whoever is posting makes it clear whether or not they are stating their own opinion, a widely held belief, or in fact, indisputable fact. Is there such a thing? Oh no let's not go there.