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Is XMRV a New Paradigm for CFS?

Discussion in 'XMRV Research and Replication Studies' started by gracenote, Apr 7, 2010.

  1. omerbasket

    omerbasket Senior Member

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    Kurt, I honestly don't know what your intentions are; I don't know if they're good intentions or bad ones, and I don't know if in the bottom line you're right or wrong.
    But you have written something in another website. I think many many people who have written things in other sites (Such as Wessely, such as Dr. Vernon etc.) were addressed here personally in people's messages. It's more difficult when it's a member of our forum - but should we act differently? Does some writer has less rights because he doesn't write in this forum?
  2. kurt

    kurt Senior Member

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    Thanks gracenote,
    I appreciate the discussion of the points and respect for the effort that went into writing that article, I had to work on it in snatches on good days...

    OK, I guess we disagree on that point about a research consensus. I think that is in fact what is happening, we are seeing a process that is new to us. The new XMRV studies are following a well known pattern in this type of research. Anyway, in my opinion a large number of patients getting better will only bring a major paradigm shift if that is empirically documented as research, using real CFS cohorts. And a formal consensus can then help get the message out to the medical system and society in general, as illustrated by the use of the NIH consensus process in other diseases. This matters, consensus is really, really important for us, in my opinion, even if it is preliminary.

    Just look at how many unproven claims are out there about CFS, the lack of a scientific consensus is a major factor in proliferation of bad treatments and bad policies. When there is no consensus, people can get wound up about all types of wild ideas about CFS. Don't you want to see that ended? One or two strong studies will not cause the level of societal change we need to have. I believe we need a consensus based on serious research, it is time.
    --Kurt
  3. cfs since 1998

    cfs since 1998 *****

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    Writing an article about medicine with a PhD in front of your name without disclosing that your PhD is in "Instructional Systems" is disingenious. It should have been disclosed.

    You are the one that needs to stop making everything personal. Every time someone is critical of your opinions or your articles you chalk it up to a personal attack! It is absurd. Your article published by the CAA misleads people into believing that you are a medical scientist when you are not. Your field of expertise should have been disclosed in the article. There is even an "About the Author" section at the bottom of the article where these facts were conveniently left out. Those are legitimate points not personal insults.
  4. omerbasket

    omerbasket Senior Member

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    I should say that many times, when everyone says something that contradicts what one says, that one might feel attacked, even if other people have no intention to attack him. I think that's natural.
  5. Gerwyn

    Gerwyn Guest

    No many hundreds of studies have not been needed to establish causation in any viral illness investigated to date.How many studies did it take to establish causation in AIDS for example
    AS a final point the problem has never been the proving of causation of an illness by a virus because of endovirus activity rather it has been establishing whether or not endoviruses cause pathology because of concommitant viral infection
  6. kurt

    kurt Senior Member

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    The forum rules apply to all forum members. Cort and many other forum members have written on other websites, some are published authors. So yes, we should act differently if a writer is a forum member, particularly if they are involved in a thread like this.

    I disagree about using the PhD, that is common across all fields of science, non-medical researchers use their PhD title when commenting on medical topics, what else do you expect? Anyway, I did state in the 'about the author' section that I am a human systems scientist, which is not medical. Maybe that is not clear to some members of the general public, I did not think about that possibility. Professionally most people seem to know that 'systems' is not 'medicine'.

    Anyway, the only real reason I can think of that any of this matters is in an ad hominim attack. Why not read the article and comment on that? Rather than on the author?
  7. Dr. Yes

    Dr. Yes Shame on You

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    Hi Kurt

    May I ask if the those at the CAA who contacted you and asked for your contribution were aware that you do not have training in biology or medicine? I do not mean this as a personal attack at all; in fact, I am concerned about the CAA, not about you -- it was primarily their responsibility to ask about your credentials and to clearly disclose them.

    While it is perfectly legitimate for the CAA to publish an opinion piece by anyone on any subject regardless of the extent of their training or experience, it is very important to prevent confusion about the qualifications of the that person. By disclosing that the person has a degree like PhD, but little else, they are essentially informing the public that this person is some sort of an authority - type unspecified. This can lead to a lot of confusion and the assumption by most readers that the person has a biomedical background, specific training, etc.. This is a common mistake, and thus it is very frustrating when publishers of scientific information or opinion do not make the qualifications of an author more clear.

    More on the article itself later (I hope), but I just thought I would clarify the issue about qualifications others raised as I saw it, which I don't think (again, I hope) were meant by others as an ad hominem attack per se.

    ETA - I agree with you that the content of your article ideally ought to be the only real discussion here, but many are sensitive to the issue of what occasionally seems to be a conflict between the WPI and the CAA (particularly Dr. Vernon), as well as to the power of politics - and therefore key venues for the generation of public and professional opinion (such as the CAA) - to change however subtly the climate for research: availability of funding, impact on mainstream media, etc.. Perhaps some of us are oversensitive, but it is hardly surprising given the unusually charged politics surrounding CFS and the individual struggles that have resulted.
  8. Gerwyn

    Gerwyn Guest

    Kurt your background is in instructional systems not human systems.XMRV is concerned with human systems

    This is some information on instructional systems

    nstructional Design (also called Instructional Systems Design (ISD)) is the practice of maximizing the effectiveness, efficiency and appeal of instruction and other learning experiences. The process consists broadly of determining the current state and needs of the learner, defining the end goal of instruction, and creating some "intervention" to assist in the transition. Ideally the process is informed by pedagogically and andragogically (adult learning) tested theories of learning and may take place in student-only, teacher-led or community-based settings. The outcome of this instruction may be directly observable and scientifically measured or completely hidden and assumed. There are many instructional design models but many are based on the ADDIE model with the phases analysis, design, development, implementation, and evaluation.
  9. kurt

    kurt Senior Member

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    I never thought much about that issue as for me 'systems' is just non medical, and I thought that was clear enough. Anyway, I have published enough in other venues using the PhD that this issue honestly did not cross my mind.

    And no, the CAA did not ask about my credentials. I assumed they found someone writing about a topic they agreed with, the consensus process. Anyway, I would not consider CAA's 'Link' publication a 'medical' venue, but maybe that credential issue was not well enough defined, that is something to take up with CAA.

    Definitely the topic of consensus is better to discuss, I am a pretty boring topic really, just another PWC with a trashed life. But I really did have my article reviewed by someone qualified and they had no problems with what was said, I think this is an important topic for people to consider in the current situation, and CAA agreed. That is the jist of the situation.

    Actually my background goes well beyond instructional systems, as I am sure you know, post-docs expand one's training. In my work with military research labs I was in human systems. But as I mentioned above, this is a point again that honestly never occurred to me, that people would equate that with medical. In my field human systems refers to human performance, training systems, readiness, software, use of applied cognitive tools (like cognitive task analysis), etc.

    XMRV is concerned with biological systems, which is different from human systems, at least in my area. But I get your point, and will see if I can clarify that in the 'about the author' section. I don't want people to stumble over this type of issue and miss the main points about the consensus process. And writing about the consensus process does not require a phd in virology, this is a basic issue in science. However, I did consult with a retrovirologist who agreed with the article's main points, had me make a few corrections, etc.
  10. Hope123

    Hope123 Senior Member

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    You know, I read the beginning of this thread and have not read the CAA article but there are a couple things I wanted to say.

    1. IMHO, both Kurt and Gerwyn as well as some other people on this forum can be argumentative and some of their arguments delve into ad hominem attacks. Frankly, I am too tired to engage in these debates for long and they tend to detract from the good salient points of the arguments.

    2. This is the Internet and everything should be taken with a grain of salt. If someone puts "Dr." in front of their name, it is up to the person reading to ask or find out what that doctorate or degree is in. OTOH, because this is the internet and CFS is still a stigmatized disorder, the first person is under no obligation to disclose what their background is. It is then up to the reader to decide how much validity to put into their statements.

    I happen to have two graduate degrees related to healthcare and it does bother me that certain people in the CFS community have billed themselves as "Dr." when in fact their doctorates are not in biology-related areas (I am not pointing to Kurt here but more people like Dr. Marshall) but I hope people are smart enough to understand this. I'm not even saying that having a biology-related degree is needed necessairily; I have had mentors who are engineers and psychologists with appointments in medical schools but these people had years of experience within medicine.

    3. If Gerwyn or anyone else is interested, I believe the CAA accepts articles from people who want to get published in it.
  11. Gerwyn

    Gerwyn Guest

    Scientific consensus is the collective judgement, position, and opinion of the community of scientists in a particular field of studyConsensus 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. Notice the part about a particular field Kurt .You are not qualified in the biomedical field and have no first hand knowledge of how consensus is achieved in that field and therefore are not qualified to comment on those "paragidm specific" processes.I would not want anyone to stumble across your work and assume that there is a single consensus process used throughout all scientific disciplines because that is clearly not the case

    In my work with military research labs I was in human systems.

    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.

    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

    What do you mean by human systems Kurt It says you designed and tested a computer based tutoring system(whilst in the military) to teach writing No mention of human systems here.is this what you mean when you say that your knowledge goes well above instructional systems when you spent three years designing and implementing an instructional system?
  12. Hope123

    Hope123 Senior Member

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    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.

    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!
  13. kurt

    kurt Senior Member

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    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.
  14. Dr. Yes

    Dr. Yes Shame on You

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    Hi Kurt.. as promised...

    To the issues you raised in your article (which, by the way, was a very clear and well-written statement of your opinion on the process you would like to see in XMRV research):

    I have to agree with a couple other posters here that, although a formal consensus process like the one you modeled would ideally be great in the case of ME/CFS in general, it is not necessary and may indeed take too long in the case of establishing XMRV's role in pathogenesis. I do not believe in rushing science at all, of course. But multiple validation studies are not required to establish a sufficient informal consensus in the scientific community as to a given agent's role in pathogenesis (causative or otherwise) such that medical and governmental (and insurance) policies would be appropriately changed. Replication studies of an adequate number or weight are often enough to change the general consensus alone, usually without an official forum or process for consensus (such as a platform like the NIH's). In the case of XMRV detection and elucidation of pathogenic role, I do agree that some amount of validation using different techniques may be necessary to achieve a clearer picture and a broader consensus, but not much.. FAR fewer good studies (such as the one Ila Singh is working on) than 'hundreds', or even than dozens, may well be sufficient. And I should point out that the Science study had internal validation experiments (following the definition given in your article) as well, which if replicated would effectively provide validation within replication studies.

    One problem with achieving consensus on the general issue of CFS is the uniquely confusing nature of poor definitions in this area.. an even bigger (and related) problem is the politics that drive much of the debate (particularly from those who argue for a psychosomatic role). The latter issue will likely make consensus far more difficult than one would objectively expect from the scientific process.

    A few specific responses..

    But it is in precisely these government advisory consensus processes that politics come into play; the danger is that consensus hosts will be unable (or unwilling) to determine who the real experts are, and give equal voice to those who lack sufficient knowledge or understanding of the more subtle scientific issues or background.

    I would say rather that there is sufficient momentum, but insufficient data.

    This is not necessarily true.. in fact, very often a large number of studies using a variety of different assays is not required, especially with the streamlining of molecular biology techniques within specialized fields.

    Your concerns about the misidentification of endogenous retroviruses that may be going on here is well noted, of course, as you have consistently presented that argument on this forum. However, I do not see why this would necessarily require a formal consensus approach in XMRV research. If researchers begin to identify the possiblity of ERV contamination, a scientific debate will automatically be established and the groups that are investigating XMRV right now (e.g. the DHHS and the CDC) will re-evaluate.

    Also, I wouldn't be too keen on having the NIH itself be the forum for definitive formal consensus. Administrationally, they have a pretty poor track record when it comes to most things CFS.

    As for terminology - some of the relevant experimental terminology is indeed confusing and misused by many scientists, and I think it would be nice to have some scientific consensus on that!

    It does more than demonstrate the reliability of methods; it definitely lends weight to the original finding! Also, the term "validation study" is often used differently than you have defined; it can be taken to mean validation of a specific technique or protocol (more in the manner that you have defined 'replication study').

    Btw, I also agree with Hope's points in a previous post regarding the consensus process.
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I enjoyed Kurt's thoughts, although I think it was a bit redundant. Some of it seemed to be saying the same thing again and again, only different ways. But the premise was interesting.

    Yet, I also think gracenote makes some very solid points.

    And, if it makes in difference, grace, you can add me to the list of people who believe it makes sense.

    Tina
  16. dannybex

    dannybex Senior Member

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    Sorry, I know it's sort of off topic, but I think the jury is still out on whether or not statins are truly beneficial.

    I know I'm way out of my league here, but since that one study was published, many others have since found serious negative effects of statins (especially the fact that they lower coenzyme Q10 levels).

    Merck knew the dangers of statin drugs and that it would cause liver and muscle damage because of the decline in CoQ10 levels. They also knew that taking supplemental CoQ10 would ameliorate, or reverse the negative effects. Because of this, Merck applied for, and received a patent for the use of CoQ10 in the treatment of statin-induced liver and muscle damage. To this date, Merck has not used the patent, nor have they informed or educated doctors about the dangers of statin drugs.

    The ASCOT study, the largest clinical trial on the effectiveness of statin therapy in women, found that women at increased risk of developing heart disease who took Lipitor developed 10 percent more heart attacks than the women who took the placebo.
  17. dannybex

    dannybex Senior Member

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    Ditto! :)
  18. serenity

    serenity Senior Member

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    luckily, i'm not even smart enough to figure out what the argument is about! haha! :)
    i'm glad, i'm happy to stay out of it & just come here for the facts i am looking for :)
  19. spindrift

    spindrift Plays With Voodoo Dollies

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    We are all in the same friggin box! So....

    [video=youtube;WybIhLJjlTY]http://www.youtube.com/watch?v=WybIhLJjlTY[/video]​
  20. Funkster

    Funkster

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    Kurt, these guys are definitively not acting according to a consensus process.

    Do you think they are acting correct or incorrect, taking into consideration that their responsibility is to protect all Canadian citizens?

    Dr. Funky Funkster, PhD in Aurora Borealis

    Canadian Blood Services Responds to Possible New Blood Safety Threat
    Chronic Fatigue Syndrome XMRV
    Author: Dana Devine, Ph.D.
    Canadian Blood Services takes the safety of the blood supply very seriously and we remain focused on the identification of potential threats to the blood supply whether they are blood borne pathogens or issues that may jeopardize the sufficiency of the supply of blood and blood products needed by patients.

    Last fall, a report was published in the medical literature which suggested that there was an association between chronic fatigue syndrome (CFS) and the presence of a virus called xenotropic murine leukemia virus-related virus (XMRV). It was found that there was not only evidence of this virus in blood samples from American CFS patients but it was much more common than in samples from healthy individuals (67 per cent in CFS patients versus four per cent in healthy Americans).

    Furthermore, these researchers could show that the virus from patient blood samples was able to infect cultured cell lines in the laboratory. What remains unknown was whether this virus is actually the cause of CFS in these patients. It was also unclear from this study whether there was actually live virus in healthy people as these researchers were only able to demonstrate a piece of the XMRV genome called ‘gag’ but not other parts of the virus that one would expect to find if the virus was intact and capable of being infectious. So, important questions remained unanswered, particularly with respect to risk to the blood system.

    Studies conducted in early 2010 in the United Kingdom and in the Netherlands were unable to confirm the findings of the American study.

    Nevertheless, the information was sufficiently important that Canadian Blood Services along with its sister organizations in the United States began to determine what should be done about protecting the blood supply.

    Recognizing that we lack a proper test to look for XMRV, the first step is focused on test development. The second step will be to test enough North American blood donors to be able to understand whether XMRV actually is carried by healthy blood donors.

    Until recently Canadian Blood Services has accepted blood donations from donors who report a history of CFS but are now well. Donors who are not well may not donate blood. However, given the lack of clarity around XMRV, we are changing the way we manage donors such that any donor who has a medical history of CFS will be indefinitely deferred from donating blood. Once we understand more about this issue, we will revisit this decision to determine whether the indefinite deferral is still warranted. We will be implementing this change in our clinics in the April/May time frame.

    [1] Lombardi VC et al. Detection of an infectious retrovirus, XMRV, in the blood cells of patients with chronic fatigue syndrome. Science 2009; 326:585-9. [abstract]

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