Is XMRV a New Paradigm for CFS?

G

Gerwyn

Guest
The computer based tutoring is called an intelligent tutoring system, that is an interdisciplinary area including artificial intelligence, cognitive science (cognitive task analysis) and instructional design. That goes well beyond 'instructional systems' and required learning much more about cognitive science.

As for 'human systems' I include the brain and cognitive processes as part of the human system. Cognitive science is within that framework. This is not an effort to misconstrue anything. Human systems is a larger framework than biological systems. Human systems includes cognition, human performance, training systems, as well as biological and medical systems.

I understand your efforts are to protect ME/CFS patients but you really are barking up the wrong tree here.
All this inquiry into my professional background has little bearing on whether what I wrote was correct. I wrote my opinion, and interviewed an expert to make up for areas I knew less about.
That is how editorial journalism works! What's the big deal? You are welcome to your own opinion, or to write your own article on some topic you care about.
The problem is Kurt is that you did purport to present an authoritative opinion re a process that you state is universally the same in all branches of science.you are perfectly entitled to express your opinion on any matter.The article did not portray that your position was just your opinion.Editorila Jurnalism might work that way but scientific journalism does not.You also did not clarify that Kuhns work had either been retracted or clarified by the man himself

computer based modelling does not include research into human systems."human systems"in this case is a metaphor and not the same as human systems

Information on intelligent tutoring systems

An intelligent tutoring system (ITS) is any computer system that provides direct customized instruction or feedback to students, i.e. without the intervention of human beings, whilst performing a task. [1] Thus, ITS implements the theory of learning by doing. An ITS may employ a range of different technologies. However, usually such systems are more narrowly conceived of as artificial intelligence systems, more specifically expert systems made to simulate aspects of a human tutor. Intelligent Tutor Systems have been around since the late 1970s, but increased in popularity in the 1990s.

I think that says it all.human systems includes the action of a real brain and cognitive processes not computer simulations thereof
 

jace

Off the fence
Messages
856
Likes
180
Location
England
Both Kurt and Gerwyn make loads of positive, informative posts here, and I for one want to thank both of them for that. It seems to me that people are pretty wound up at the moment, not surprisingly, with all the exciting developments offering real hope at last. Please can we live and let live, accepting and appreciating all the myriad differences that this forum encompasses?

May our good days grow.
 
G

Gerwyn

Guest
Scientific consensus is the collective judgement, position, and opinion of the community of scientists in a particular field of study. Consensus implies general agreement, though not necessarily unanimity. Scientific consensus is not by itself a scientific argument, and it is not part of the scientific method.

The NIH consensus conferences is not an example of processes involved in reaching a scientific consensus

consensus is reached by the following panelists

* Must not be employees of the U.S. Department of Health and Human Services.
* Must not hold financial or career (research) interests in the conference topic.
* May be knowledgeable about the general topic under consideration, but must not have published on or have a publicly stated opinion on the topic.
* Represent a variety of perspectives, to include:



o Practicing and academic health professionals
o Biostatisticians and epidemiologists
o Clinical trialists and researchers
o Non-health professionals with expertise in fields relevant to the specific topic (ethicists, economists, attorneys, etc.)
o Individuals representing public-centered values and concerns

Scientific consensus is achieved betwwen practitioners in a particular field of science not by a multidisciplinary panel
 

jeffrez

Senior Member
Messages
1,112
Likes
682
Location
NY
I welcome all attempts to shed light on CFS and validate it as a legitimate illness. I don't agree, however, that the XMRV theory or research represents a "paradigm shift." Infection by pathogen is in fact one of the predominant illness paradigms in mainstream modern medicine, and many similar theories specific to CFS have been proposed over the years, including most obviously Epstein Barr. The oxidative stress theory is much more of a paradigm shift from the standpoint of mainstream medicine than XMRV, imo. In fact, if XMRV is found to be a major cause of CFS, treatable by anti-retrovirals, that would fit in perfectly with current medical and scientific disease paradigms.
 

kurt

Senior Member
Messages
1,177
Likes
370
Location
USA
The problem is Kurt is that you did purport to present an authoritative opinion re a process that you state is universally the same in all branches of science.you are perfectly entitled to express your opinion on any matter.The article did not portray that your position was just your opinion.Editorila Jurnalism might work that way but scientific journalism does not.You also did not clarify that Kuhns work had either been retracted or clarified by the man himself

computer based modelling does not include research into human systems."human systems"in this case is a metaphor and not the same as human systems

Information on intelligent tutoring systems

An intelligent tutoring system (ITS) is any computer system that provides direct customized instruction or feedback to students, i.e. without the intervention of human beings, whilst performing a task. [1] Thus, ITS implements the theory of learning by doing. An ITS may employ a range of different technologies. However, usually such systems are more narrowly conceived of as artificial intelligence systems, more specifically expert systems made to simulate aspects of a human tutor. Intelligent Tutor Systems have been around since the late 1970s, but increased in popularity in the 1990s.

I think that says it all.human systems includes the action of a real brain and cognitive processes not computer simulations thereof
ITS research involves measurement of human outcomes, including evaluation of training the 'real brain'. The computer simulations are what is being tested, but to design them one must understand and evaluate cognitive functions. Thus it is applied research within the framework of human systems. I would agree this is not basic research, as the purpose is not to uncover new human brain functions, it is applied.

Scientific consensus is the collective judgement, position, and opinion of the community of scientists in a particular field of study. Consensus implies general agreement, though not necessarily unanimity. Scientific consensus is not by itself a scientific argument, and it is not part of the scientific method.

The NIH consensus conferences is not an example of processes involved in reaching a scientific consensus

consensus is reached by the following panelists

* Must not be employees of the U.S. Department of Health and Human Services.
* Must not hold financial or career (research) interests in the conference topic.
* May be knowledgeable about the general topic under consideration, but must not have published on or have a publicly stated opinion on the topic.
* Represent a variety of perspectives, to include:
o Practicing and academic health professionals
o Biostatisticians and epidemiologists
o Clinical trialists and researchers
o Non-health professionals with expertise in fields relevant to the specific topic (ethicists, economists, attorneys, etc.)
o Individuals representing public-centered values and concerns

Scientific consensus is achieved betwwen practitioners in a particular field of science not by a multidisciplinary panel
The purpose of a multidisciplinary panel is clear in the NIH process. This provides a broader perspective.

I welcome all attempts to shed light on CFS and validate it as a legitimate illness. I don't agree, however, that the XMRV theory or research represents a "paradigm shift." Infection by pathogen is in fact one of the predominant illness paradigms in mainstream modern medicine, and many similar theories specific to CFS have been proposed over the years, including most obviously Epstein Barr. The oxidative stress theory is much more of a paradigm shift from the standpoint of mainstream medicine than XMRV, imo. In fact, if XMRV is found to be a major cause of CFS, treatable by anti-retrovirals, that would fit in perfectly with current medical and scientific disease paradigms.
The article asks the question if XMRV is a paradigm shift for CFS. Not a paradigm shift for general medicine. I am using paradigm in a general sense, as is common. A retroviral explanation for CFS, regardless of which specific pathogen, could represent a major paradigm shift for the CFS world, and that is my point.
 
Messages
577
Likes
10
The article asks the question if XMRV is a paradigm shift for CFS. Not a paradigm shift for general medicine. I am using paradigm in a general sense, as is common. A retroviral explanation for CFS, regardless of which specific pathogen, could represent a major paradigm shift for the CFS world, and that is my point.
I thought the article was about how slow and methodical it can be to reach a scientific consensus. That is how the CAA describe the article and that is what you talked about in your conclusion. "Paradigm" may have been in the title of the essay, but the title and the topic of the article are not congruent at all. Even so I really don't think XMRV is a paradigm shift for CFS unless you're Reeves or Wessely, since there is no dominant paradigm and viruses and retroviruses have been long suspected.
 
G

Gerwyn

Guest
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
 

jeffrez

Senior Member
Messages
1,112
Likes
682
Location
NY
The article asks the question if XMRV is a paradigm shift for CFS. Not a paradigm shift for general medicine. I am using paradigm in a general sense, as is common. A retroviral explanation for CFS, regardless of which specific pathogen, could represent a major paradigm shift for the CFS world, and that is my point.
I'm not trying to denigrate the quality of the article, which I think has a very good explanation of scientific/medical consensus. Regarding XMRV being a paradigm shift for CFS, however, I'll just echo what I said before and what cfs since 1998 said about a viral cause of CFS being suspected for a long time. EBV was probably even the very first widespread theory of CFS. So any quibbling about virus vs. retrovirus aside, the idea of some sort of viral pathogen as the causative factor doesn't appear to be a new paradigm. Which in practical terms is actually a good thing, because I think it will be very much easier for the vast majority of doctors to understand and accept that kind of cause than one arising from an actual paradigm shift.

About XMRV itself, I think in a strange way it's a good thing that it's tied to prostate cancer and that it appears to be in the blood supply. Iow, don't be fooled into thinking all the research has anything to do with CFS. The main reason for this increased interest and even urgency in researching XMRV is because of public health concerns and liability issues having to do with prostate cancer and the blood supply. Like someone was quoted in the WSJ article, they are in the position now of not wanting to spread a potentially dangerous retrovirus, but also having to balance that concern with not shutting off too much of the blood supply. So they need answers ASAP. If CFS patients are also benefited because of it, that will just be a side-effect, in my opinion. Though a welcome one. Thank god at least that WPI is involved. Otherwise, we would probably be left out in the cold even if something is found regarding prostate cancer.
 
G

Gerwyn

Guest
i,ve been asked about the term paragidm shift here it is

An epistemological paradigm shift was called a scientific revolution by and historian of science Thomas Kuhn in his book The Structure of Scientific Revolutions

In The Structure of Scientific Revolutions, Kuhn wrote, "Successive transition from one paradigm to another via revolution is the usual developmental pattern of mature science." (p. 12) Kuhn's idea was itself revolutionary in its time, as it caused a major change in the way that academics TALK about science.


Thus, it could be argued that it caused or was itself part of a "paradigm shift" in the history and sociology of science. However, Kuhn would not recognise such a paradigm shift. Being in the social sciences, people can still use earlier ideas to discuss the history of science.

Philosophers and historians of science, including Kuhn himself, ultimately accepted a modified version of Kuhn's model, which synthesizes his original view with the gradualist model that preceded it.

Kuhn's original model is now generally seen as too limited.


In the later part of the 1990s, 'paradigm shift' emerged as a buzzword, popularized as marketing speak and appearing more frequently in print and publication.[7]

In his book, Mind The Gaffe, author Larry Trask advises readers to refrain from using it, and to use caution when reading anything that contains the phrase.

It is referred to in several articles and books[8][9] as abused and overused to the point of becoming meaningless.
 
Messages
577
Likes
10
The article asks the question if XMRV is a paradigm shift for CFS. Not a paradigm shift for general medicine.
That's not what you said in your article:

"the term 'paradigm shift' was defined as a change in the basic assumptions and explanations for an entire field of science."

Then you say:

"for CFS...[not for] general medicine"

Which is it?
 

jspotila

Senior Member
Messages
1,099
Likes
778
Re: the consensus process. This is needed say for government, policy, insurance coverage (private or public), and many other reasons but decisions are often made by healthcare staff in the absence of consensus/ guidelines. It's the nature of medicine; if we waited for consensus, it might take too long. If individual practitioners or patients want to wait though, that is their choice. Healthcare staff make decisions also based on clinical experience, colleague's experiences, case studies, etc. In fact, the IACFS is currently working on a clinical guideline for CFS.

Also, consensus can and is often made even without the best evidence. Issues of timeliness, cost, ethics, logistics, etc. play into this. A common schema for putting together guidelines is to rank both the quality of evidence (at the top, randomized double-blind placebo-controlled trials; in the middle, observational studies; at the bottom, expert advice) and the risk vs. benefit of a particular recommendation.

Finally, consensus is hard to reach and recommendations might differ among different groups. For mammography for instance, the US Preventive Services Task Force recommend screening start at 50 while the American Cancer Association suggests starting at 40. Both are prestigious groups and some practictioners follow the former, others the latter while a third group tailor it based on the individual patient.
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.

On a practical note, at the last CFSAC meeting, the NIH state-of-the-art conference was slated for 2011 but I have now heard that since there is a lack of funding, the conference might be slated for even later!
This would be an outrage, especially at this moment. I'm surprised this is not getting more buzz here! Hope123, do you have any official confirmation of this that you can share, or just off the record info? The community really needs to pound on this if it is true.
 
G

Gerwyn

Guest
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.



This would be an outrage, especially at this moment. I'm surprised this is not getting more buzz here! Hope123, do you have any official confirmation of this that you can share, or just off the record info? The community really needs to pound on this if it is true.
the NIH process is not a formal scientific consensus.
 

Hope123

Senior Member
Messages
1,252
Likes
1,071
This would be an outrage, especially at this moment. I'm surprised this is not getting more buzz here! Hope123, do you have any official confirmation of this that you can share, or just off the record info? The community really needs to pound on this if it is true.
This is from a conversation I had with someone with ties to CFSAC but I don't have particular documents or people I can cite publicly. So it's off the record. However, people should write about or testify about it during the meeting. As I mentioned in my other post, it's unfortunate that the public is unable to ask questions of the committee directly but can still enter questions into the public record this way.
 

jeffrez

Senior Member
Messages
1,112
Likes
682
Location
NY
I think the concern about "consensus" is in a practical sense exaggerated, and that all this talk of "consensus" is therefore largely irrelevant. If a legitimate cause of CFS is identified, and a treatment found for it, it's not going to matter much whether there is any so-called "consensus." There always will be at least some clued-in doctors who will be willing and able to give the treatment, and when people get better from it that will be hard for naysayers to ignore. Of course they will always be free to ignore whatever they want, but what do we care as long as we are better.

The issue of affording the treatment if insurance doesn't cover it because of a lack of "consensus" might be an issue, but for something like a retrovirus responding to an antiretroviral would seem to be fairly straightforward. I don't really think any CFS sufferers are going to care if there is a "consensus," as long as we are getting effective treatment and are well again. I think we are overestimating its importance in terms of treatment, and underestimating how quickly attitudes are likely to change in light of an effective treatment. For all their philosophical faults, most doctors seem to be pretty pragmatic. They just want to know what works.
 

kurt

Senior Member
Messages
1,177
Likes
370
Location
USA
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
When there is disagreement in studies, a consensus is needed. That may be informal among doctors treating but often a formal process is eventually required to change the greater systems (insurance, govt programs, med schools, etc.).

Consensus is not convoluted, unless people make it that way.

I believe we will need many studies to sort this out. Maybe less than 100, that is just an arbitrary benchmark, sometimes there are that many before there is some consensus. In fact, there are already 34 indexed studies on PubMed for XMRV, if you include the prostate studies, so this literature base is growing rapidly already.
 
G

Gerwyn

Guest
When there is disagreement in studies, a consensus is needed. That may be informal among doctors treating but often a formal process is eventually required to change the greater systems (insurance, govt programs, med schools, etc.).

Consensus is not convoluted, unless people make it that way.

I believe we will need many studies to sort this out. Maybe less than 100, that is just an arbitrary benchmark, sometimes there are that many before there is some consensus. In fact, there are already 34 indexed studies on PubMed for XMRV, if you include the prostate studies, so this literature base is growing rapidly already.
you are welcome to believe what you like ,The consensus process you describe above is not a scientific consensus.

XMRV has been found in people diagnosed according to the ccd criterea but not in people not diagnosed by that criterea.I see no need for any kind of consensus process in such a clear cut situation
 

Dr. Yes

Shame on You
Messages
868
Likes
46
Hi Kurt,

When there is disagreement in studies, a consensus is needed.
That almost never happens in practice, though. And few ever expect it to. There are rarely even mechanisms for consensus in most research fields. Now and then, some organization or even an individual scientist will call for a conference to try to sort out the disagreements over a subject in their field, but nothing may come out of it, and even if some consensus is reached there is rarely any means of requiring adherence to whatever the majority agree upon.

That may be informal among doctors treating but often a formal process is eventually required to change the greater systems (insurance, govt programs, med schools, etc.).
As I said in my previous post, consensus (when it exists) is most often informal among researchers as well; in matters of policy (insurance or government) there often is NOT the kind of good formal consensus you advocate for in your article; instead, policy is made behind the scenes by a handful of policy makers with unknown input and agendas, often to the great frustration of the actual researchers. (For example, doctor and scientific testimonials critical of NIH policy making are abundant; there are some in recent CFSAC meetings; even Osler's Web contains reports of examples from doctors and scientists who were involved - or shut out.) Also, insurance company policy very often clashes with scientific/medical consensus, and unless required by federal legislation they tend to determine policy independently.

Consensus is not convoluted, unless people make it that way.
Unfortunately, they often do in politically volatile contexts, like this one.

I believe we will need many studies to sort this out. Maybe less than 100, that is just an arbitrary benchmark, sometimes there are that many before there is some consensus. In fact, there are already 34 indexed studies on PubMed for XMRV, if you include the prostate studies, so this literature base is growing rapidly already.
I really haven't heard of the "number" of studies ever being an index of how likely any consensus is to be achieved - formal or informal. It is not the volume of the research base that matters but how compelling the arguments presented; in fact experimental quality (i.e. strength of evidence, not amount) is what scientists go by, rather than the more abstract concept of a research base. Only in cases where there are rather diffuse findings will the cumulative arguments of a larger research base be more significant, but I find it hard to believe that this will be the case in XMRV research. It may well come into play in ME/CFS research as a whole, however. It already should have, but the mechanisms for proper consensus simply do not exist - or else have been stymied by politics and other factors that have nothing to do with good science.