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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Cleaning up after XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Ecoclimber, May 18, 2012.

  1. Esther12

    Esther12 Senior Member

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    Please people.... lets not start e-mailing researchers to ask them how long they work in the lab!
    jace and SOC like this.
  2. Ecoclimber

    Ecoclimber Senior Member

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    Ester, asleep accuses you of assumptions and idle speculations without any scientific proof or verification and then asleep turns around does the same thing with his own responses made with assumptions, idle speculations without any evidential or scientific proof. Typical of the rhetorical responses using 'red herring' and 'strawman' techniques ....go figure.



    Eco
  3. Ecoclimber

    Ecoclimber Senior Member

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    Don't worry Ester, they won't respond to such a request

    Eco
  4. Bob

    Bob

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    Yes, 22RV1 seems to be a contaminant. But what about the other variants that have been found, such as in the Lo and Hanson studies? Can those easily be explained by contamination? We don't know where those sequences are originating from. If these various sequences are a result of contamination, then what is the original source of the contamination? Hanson says it's not mouse contamination. So we don't have any answers.

    It seems possible that samples are being contaminated by novel sequences from unknown sources, and there are now a number of studies in which the contamination has not been explained. Such unknown contamination led to the discovery of XMRV in the 22RV1 cell line, so where will these new sequences lead us?

    As for XMRV being 'not harmful' to humans, we have absolutely no evidence for that at all.
    We know that it infects human tissue, and continues to reside in the tissue.
    We do not know whether it would have any harmful effects or not.

    XMRV 22RV1 might not be related to CFS/ME/Prostate cancer, but what about the other unexplained variants that continue to be found? With so many disparate and unexplained results, can we have any certainty?
    jace, asleep, SOC and 1 other person like this.
  5. Bob

    Bob

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    I think that might be too simplistic Esther.
    There are so many unknowns about this science, that we cannot possibly understand all of the variables involved in the research.

    The BWG was one negative study, and it does not prove anything in itself, but considered alongside all the other research, then an understanding of the science starts to evolve.

    When scientists sign up to studies such as BWG & Lipkin, they have to sign a contract saying that they will agree with the group findings. So it was not possible for Judy to dissent once she had committed to the project.

    Having said that, when I've seen Judy Mikovits comment informally, she seemed to concur with the conclusions of the BWG study, but seemed to suggest that the reasons for a negative result might be related to them being too specific about which sequences they were looking for. She seemed to be moving away from looking for VP-62, or similar, sequences. I haven't heard her say anything about it for ages now though.

    So my main point here is that there are so many unknown variables, and the science seems to be cutting edge, and some of the results do not seem to be easily explained by contamination. Various results are still unexplained.

    Yes, we don't have enough evidence to say that XMRV is related to ME, but there are still questions, and not enough answers.


    I think it's unhelpful to pit positive studies against negative studies, but instead we should be finding out why there are discrepancies. Only once we fully understand where all of these sequences are coming from, will we have a full picture of the science.


    I seem to remember that Judy Mikovits has made some informal comments re the BWG results.
    From memory, she seemed to be accepting the BWG results, in relation to XMRV, but seemed to be moving towards looking for, and researching, other (less-specific to VP-62) MLV-related sequences. That was a long time ago though.
    currer and asleep like this.
  6. currer

    currer Senior Member

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    Grafting human tissues into mice in the course of cancer research would itself cause MRV variants to emerge which are adapted to the tissue in question - breast, prostate etc.
    We have known since the Lo paper two years ago that we are looking for polytropic retroviruses and there is no reason to assume that it is only one sequence - Dr Mikovits stated last year that she was finding many variants in her samples.
    The narrowing of the discussion to the XMRV sequence is a manoeuvre to try to discredit this research.
    jace and asleep like this.
  7. asleep

    asleep Senior Member

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    Ideas and open forums have no geographical boundaries. This whole US vs UK business is irrelevant. I'm an American taxpayer and I wish that some of your researcher friends would spend some of their lengthy lab hours learning how to better temper their conclusions to match the data. Maybe they could put in a phone call to Dr. Hanson who has superbly demonstrated how to properly use scientific evidence to draw reasoned conclusions. Pointing out how researchers have overstepped the evidence in their conclusions is not "discrediting" them (except to the extent that it exposes how un-scientific they are behaving). It also has nothing to do with speculating about motives: overstepping the evidence is an un-scientific and independently observable phenomenon, regardless the motivation.

    Huh? One does not have to have "scientific proof" to logically point out how someone else has filled in empirical gaps (unknowns) with unsubstantiated claims (assumptions/speculation). The act of pointing this out, by itself, is neither assumption nor speculation (unless empirical gaps are being assumed where they don't in fact exist...which is not the case with Esther's claims). Pointing this out is also neither a rhetorical ploy nor a logical fallacy.
    jace, RustyJ, currer and 1 other person like this.
  8. Ecoclimber

    Ecoclimber Senior Member

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    I meant You Asleep not ukxmrv

    Your response to Ester Statements accusing her of assumptions and speculations
    You are also making a huge, ungrounded assumption here. Isn't Lipkin requiring pre-approval for all participants to have their names listed on the outcome? Who's to say something similar wasn't in play here?

    Asleep you just made an assumption and speculation with your questions. There is no evidence to back up your statement which you accused Esther of doing, hello?

    And even if it wasn't, do you honestly think that Mikovits could have grandstanded on the the attachment of her name to "unfavorable" results without being viciously raked over the coals, no matter how legitimate her concerns? That would have been political suicide.
    Again asleep, idle speculation and assumption with no evidence to back it up. What you just accused Ester of doing in her statements you just committed...seems almost hypocritical, don't you agree?

    Eco
  9. Mark

    Mark Acting CEO

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    Do you never post claims without any evidence? Are we supposed to just accept evidence-free assertions when it is you who is posting? What is the difference between the lack of evidence you are complaining about here, and your own assertions based on claimed contact with researchers, which we have no way to verify?

    Do you mean to say you are not anonymous? Does this mean you are happy to reveal your real name?

    Eco, I address the following to you as an attempt to get us all out of the horrible and negative cycle that's going on here once again, and to try to shed some light on this unfortunate continuing dynamic that seems to surround you when you post on ME/CFS forums...

    If I take everything you say at face value, and assume that what you say is all true, then what confuses me is that you seem to be saying: "I have contact behind the scenes with all these researchers; I know things that I can't talk about; the researchers talk amongst themselves and share information with me that is not in the public domain; here are some hints and clues about what is going on in that private world".......but then you object strongly when some people claim that you are part of a conspiracy and are relaying information from a closed private group and are therefore, in effect, acting as the mouthpiece of that group (you object to that even though that appears to be exactly what you yourself have said you are doing), and you complain about people making comments that are not backed up by evidence, even though what you say yourself is not backed up by any evidence or references either.

    I am puzzled as to why you don't see this to be a double standard, but I imagine the reason is that you know that your own un-evidenced speculation is actually true, because you have the contacts behind the scenes and are "in the know", and that this therefore justifies anything you might say without a need for you to provide evidence. But then the real problem here is perspective, because there is no reason for anyone else to know whether what you say is true or not, in the absence of any evidence. Aside from which, rumours and inside information naturally do flow on both sides of this argument.

    One can argue about the word 'conspiracy', but I frequently find it odd when people (and this includes scientists, business people, and many others) say to the outside world: "Look, all this talk of conspiracy is absolute nonsense! It's just ridiculous! I know for a fact there is no conspiracy, because I personally know many of these people who are accused of conspiracy - and they are lovely people; we meet privately to share information and discuss important issues all the time...". What strikes me in this is that there is rarely an awareness from either side of the other's reality: Eco, from the point of view of somebody outside this privileged group that makes decisions that affect their lives, what you describe is a conspiracy. Conversely, anybody from outside such a group, looking in and wondering what they're up to, needs to understand that the people they are talking about certainly don't consider themselves to be a "conspiracy" at all - so that kind of language leads to a great deal of confusion...

    There's a real looking-glass element to this whole dynamic, because Eco, you complain about the angry reactions, the conspiracy theories, the persecution of researchers, and yet what you do, when you post comments like you have above, encourages paranoia, winds people up and whips them up into a frenzy! Please consider this: Do you imagine that publicly berating and insulting people for being aggressive and harming the prospects for research is going to make them less angry, or more???

    Does that question give you any insight into how the responsibility for the current situation lies on both sides of the argument? Patients who are angry and aggressive and suspicious are the way they are for good reason, and researchers threatening them (directly or indirectly) that they are going to stop researching a disease which affects 17 million people and which has never been properly researched, because many of the patients are really angry and a few of them are so angry that they make the researchers' lives uncomfortable....well, do you really imagine that veiled threats like that are going to be an effective tactic and make those people any less angry?

    If your answer to all this is bluntly to say: "Look: This is just a reality, researchers are going to avoid studying this illness because of all the aggressive campaigning", then you're saying that, because within those 17 million people there's a group of maybe a hundred of them who keep sending us nasty emails, we are not going to study this disease. In that case I bluntly say in response: If that is true, then that is a contemptible, disgraceful attitude, and it justifies the anger of people who know that this disease is not, and never has been, studied properly in the first place. But why focus, constantly, on that group of people? Why not focus your attention instead on those patients who are simply chronically ill and want the same kind of help and recognition that is available to other chronically ill people in our society? Why obsess about the most extreme minority you can find? In doing so you only wind them up and make the situation worse! If you feel as you say, can you really not "just ignore them"?

    As for your comments about the UK, I must say I find those offensive and lacking in insight. Yes, US research into ME/CFS, grossly underfunded though it still is, is light years ahead of the UK, and a source of great hope. But to blame the UK patients for the lack of research in the UK compared to the US is so unfair. To turn cause and effect on its head in this way, and imagine that the research situation in the UK is dire and disgraceful because the UK patients are angry, rather than the other way round, is just to abuse the victims of a situation and say that their oppression is their own fault.

    Where I could almost agree with you is that I would say to those angry and aggressive voices that their understandable aggression is really not helping the situation and is just providing ammunition for the forces that oppress them. But I would stop well short of castigating them and blaming them for being the victims of this situation - it is really not of our own making, and the people who refuse to research ME as the real illness that it is, and continue to deny it and insult and dehumanise the patients, surely have to take the lion's share of the blame? Perhaps, if you are going to comment on the UK and criticise what happens over here, you could let us all know what you think of White, Wessely, Chalder, Sharpe, and the rest of the insurance industry-funded denialists? Do you have anything to say about them, or is it just the patients who you blame for what goes on over here?
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  10. Bob

    Bob

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    Eco, I'd like you not to take what I'm about to say personally, as I'm not directing it at you or any activities that you may have been involved in...

    There is good reason that many of us believe that there has been some sort of effort to close down the XMRV research.
    I have no idea if there is some sort of wider conspiracy, or not, but what I have seen from a number of scientists, left me with the perception that some of them were making outlandish premature conclusions, which were not based on sufficient evidence.

    This perception stems from the arrogant conclusions that some researchers have made based on their individual studies. Once they had detected no sequences in their single study, they swiftly concluded such things as: "XMRV does not exist", or "XMRV is not related to ME".
    This is the sort of language that they used, and it seemed to based more on arrogance than on a proper scientific analysis.
    For example, it would have been more balanced and accurate to say "we were unable to detect any MLV-like sequences in our samples", rather than "XMRV does not exist in ME patients." Particularly because it was already suspected that the copy numbers were at, or beyond, the limits of PCR detection.

    As has been discussed in this thread, such conclusive language is misplaced, and it made many of us wonder what their motives were.
    Personally, most of the time, I considered it just to be professional arrogance, alongside a childish kind of tit-for-tat behaviour.

    But I don't rule out certain agencies wishing to shut the research down quickly in order to avoid controversy.
    Actually, I'd be very surprised if government agencies didn't have various damage limitation strategies in place, in order to avoid huge and expensive public controversies.

    Eco, don't you remember what happened in the early days of XMRV?
    First many researchers immediately dismissed Mikovtis' research outright, and said that XMRV was just a laboratory artifact.
    Then, after it was clear they were wrong, it was said to be purely mouse DNA contamination.
    Then, after that was proved incorrect, it was said that it was a mouse ERV, and nothing else.
    Then, and only after a long period of controversy, it was announced that it was a novel virus, accidentally created in a lab, that is able to infect human tissue... but has never infected humans... Ever!

    I'm not saying it was an official conspiracy, but there has definitely been attempts to minimise Mikovits' research, coming from various scientific voices.

    Now, we are told that all the positive results originate from lab contamination from 22RV1, but this clearly isn't the case either, because many of the detected variants are not close enough to 22RV1 to be explained by 22RV1 contamination, as far as I understand.

    All the time, while there was so much unknown about XMRV and 22RV1, many researchers were saying that XMRV does not exist, or that XMRV research should be discontinued, or that there is no relationship between XMRV and ME.

    Time has proven them to be wrong, at least with the first two points.

    I don't know if there is/was a conspiracy or not, but there have been so many individual voices prematurely declaring that XMRV does not exist (at all, or in ME patients), or that XMRV isn't related to CFS (before they could possibly know for certain), that it has certainly seemed at times like there has been some sort of collaborative effort to stop further XMRV research in relation to CFS/ME.


    Yes, we are all waiting for the next generation studies.


    Believe me, we try to get funding but it doesn't happen.
    We are very pleased and grateful to have the USA leading the way with ME research, but that doesn't place researchers above criticism. Nor should it.


    I have to say that O'Keefe does seem to be saying exactly what RustyJ said.
    She seems to be saying that there is some sort of pressure for scientists to conform.
    It has felt like that from many of our perspectives for ages.

    Again, it might not be a cooked up conspiracy. It might just be normal politics at play, where various individual scientists are protecting their own status, their own departments, their funding, or allowing their professional arrogance to cloud their judgement. But there do seem to be a number of voices who are more interested in seeing an end to the research, rather than exploring all the possibilities.

    Eco, I know that you believe that many patients have been unreasonable in terms of attacking researchers, but if you can step away from your unfortunate personal experiences with patients, I hope you will be able to see that some XMRV researchers have been unreasonable, and unscientific, in the way they have announced their conclusions about XMRV. It is this lack of reason, leading to apparently biased over-blown conclusions, that upsets many of us. The ME community has always been under attack from certain sections of the scientific community, who have had a deeply detrimental affect on all of our lives, and so it is especially painful when we see behaviour that we perceive to be biased against us.

    Eco, I know you got involved in some controversy, and had a hard time from patients in relation to some research you say you were involved with. But I think you should know that most people on this forum are open minded, and judge people on what they contribute to the forum. So maybe you should stop seeing us all as your enemies? When you contribute positively, I consider what you say on its merits.

    When we criticise researchers in general, you shouldn't take it personally. It isn't directed at you.

    (My vain attempt at a bit of community reconciliation, and harmony!)
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  11. SOC

    SOC Moderator and Senior Member

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    All excellent points, Mark. Thank you.

    There is one little point I'd like to chime in on, though. I didn't read Eco's comment as blaming the UK patients for the appalling state of ME/CFS research in the UK (although if that was what he meant, I agree that it's offensive and unjustified). What I heard was something more along the lines of "Clean up your own house before you go around complaining about others' dirt."

    While I agree that even that statement has an element of thoughtless unkindness, it sounds more defensive than offensive.
  12. asleep

    asleep Senior Member

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    Actually, I completely disagree with you. There is absolutely nothing hypocritical about it. The difference boils down to making positive claims based on assumption (what Esther was doing) versus discussing alternative possibilities as a means of exposing these assumptions (what I was doing).

    In the first quote above, there is an observable fact (Mikovits's name on the paper) and an unknown (why her name is there). Esther stated: "If Mikovits thought that the BWG's paper was making incorrect claims, then she should not have put her name on it." This makes a definitive assumption that Mikovits could have and would have refused to attach her name if she felt the paper was "making incorrect claims." It assumes that it is not possible for Mikovits to leave her name attached despite believing the paper made incorrect claims.

    I pointed out this assumption by highlighting an alternative possibility for explaining the observable fact. Note how I used question marks and did not state it as definitive or factual.

    The second quote is a continuation of my first point, which is again pointing out another possible reason (political fallout, in this case) for Mikovits leaving her name on the paper despite potentially disagreeing with it. Note again the question mark. I probably could have been more careful with my wording in the last sentence, but the point was to drive home the likely motivation behind this possible, alternative explanation.

    I was at no point saying that Mikovits did attach her name because X, Y, or Z. I said it was possible that Mikovits attached her name because of X, Y, or Z, thus exposing the assumption in Esther's initial positive claim.
  13. Esther12

    Esther12 Senior Member

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    Still... it might not be the best PR for CFS to have patients e-mailing researcher to check up on their time sheets!

    The 'should' was important. That makes moral assumptions, which I would be happy to defend. It does not assume "that it is not possible for Mikovits to leave her name attached despite believing the paper made incorrect claims." That's just wrong. It seems that you made incorrect assumptions about what I was assuming!


    I'm certainly not saying that we understand all of the variable... but it could well be that we never will. I'd be amazed if we ever full understood where all of these sequences are coming from. If Mikovits, etc, are unable to distinguish between samples from CFS patients and controls, or from samples from those who have previously tested 'positive' and those who previously tested 'negative', then that's more important than why they sometimes detect certain sequences in random samples, particularly when we know how easy it is for contamination to occur.
  14. Bob

    Bob

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    Yes, Eco is being defensive here, because he feels like some of the comments in this thread are being directed towards him personally. (That's my interpretation, anyway.)
  15. currer

    currer Senior Member

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    I think we should be careful about making assumptions about the BWG as I remember that MIkovits said at the Invest in ME conference last June that she was having problems with the BWG protocol for the treatment of blood specimens and the chemicals used - I'd have to check the DVD for the details but the impression I got was that she was doing her best to comply with their requirements but did not feel their techniques were successful. I have posted about this before.
    Isn't this the reason for the Lipkin study? - to give researchers a chance to use their preferred method?

    It is certainly true, as Bob has pointed out many times before, that the XMRV research has forced the research community to accept uncomfortable truths, ones they initially denied.

    There really are lab created retroviruses capable of replicating happily in human cells which pose an unknown biohazard to lab personnel. This is a truth we know now which was denied two years ago.

    This challenges complacency and shows that we are already confronting a previously unknown or unacknowledged threat. So why be complacent about the other half of the question?
    We do not know how many viral sequences there might be to be discovered nor whether they are pathogenic. Another couple of years of unbiased research could lead us into hitherto unsuspected territory!

    As we have already discovered an unsuspected problem and had to admit to it, why assume there is nothing more to find out?
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  16. Bob

    Bob

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    I disagree Esther. The purpose of science is to gain a greater understanding of our world. If science is only interested in gaining a partial understanding, then it's not doing its job. If a study provides negative results when positive results were expected, then the next step is to find out why. Only by doing this, does science move forwards. The question about certain types of contamination, is that no one seems to have any clue what type of contamination they are finding in some of the studies, such as the Hanson and Lo studies. The sequences don't belong to any known DNA. So we can't just dismiss these findings. They could be important findings for any number of reasons. It might not be relevant to ME, but there again, it might be. Also, I wouldn't necessarily agree that sequences have been found in just 'random' samples. Three studies have now found more sequences in patient samples than controls. Why?
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  17. Ecoclimber

    Ecoclimber Senior Member

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    I believe a moderator should maintain neutrality and impartiality with regards to reviewing comments by poster. Otherwise you can steer the forum to one viewpoint over another. I have notice recently how many posters including yourself are from the UK and have embedded themselves in this forum. Unfortunately some of these posters on here change their stripes as members of other forums and assail comments made on here by others and against researchers.

    I sent you Kina a PM with my statements but I am leery of sharing them with you.I will contact Cort. There are other remedies at hand to put a stop to this. Researchers are engaged in prostate cancer research but because of the contamination issue veered over to the ME/CFS patient community. They read the threads on this forum and other forums and are appalled as to how they are being disparaged on these forums. But, then this is all hearsay, unless I disclose the email communications with them or reveal my sources. Investigative reporters from the most prestigious newspapers are able to obtain information from undisclosed sources within organizations who wish to remain anonymous.

    What I object to is the libelous and defaming statements and attacks leading researchers without one shred of evidence. The attacks on Lipkin and Racienello are without foundation and substantial. They have gone on public record how they have received the most vile and vitriolic comments from patients which is very disturbing to them. When members of other forums which comprise of members here concerning that Lipkin is part of this so called conspiracy and will produce negative results is libelous and defaming and impinges on his reputation and motives.

    As to "Perhaps, if you are going to comment on the UK and criticise what happens over here, you could let us all know what you think of White, Wessely, Chalder, Sharpe, and the rest of the insurance industry-funded denialists? Do you have anything to say about them, or is it just the patients who you blame for what goes on over here?'

    I have conducted my research and agree totally that there is collusion among Unum, the Welcome Trust with those names mentioned above. There is no doubt there is a social policy against ME patients in the UK. How else would you explain the quick turn around on the negative research in a few months by UK researchers who previously had not interest.

    But we are talking about U.S. scientists here not U.K. scientists

    I am surprise that would exceed as a moderator your authority by posting bias commentary on here. A moderator should maintain impartiality if they are to be an effective moderator and set aside their prejudices and biases as well.

    I will not be posting on here again and will seek other remedies to correct this problem

    Eco
  18. Esther12

    Esther12 Senior Member

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    Hi Bob.

    Science can only ever gain a partial understanding of our world. It would be nice if we could do more than that, but we cannot.

    Contamination can happen so easily, and from so many different sources, that to try to find out where every instance of contamination came from would need massive amounts of funding, and might still not be possible. It's not a sensible thing to aim for imo.

    re three studies with more positives in patients: Huber started finding more positives in controls... but because that didn't make sense, they assumed that it was contamination, and began a more thorough search. If, just by chance, the contamination had affected patient samples more than control, then it's less likely that contamination would have been assumed - we could have then had another 'positive' study. Science is affected by the expectations of researchers, so when researchers start expecting an association with a virus and a patient group, they will be more likely to publish results that support this assumption, and pick apart results which conflict with this assumption. It could be that there were other studies that found higher rates of positives in controls but again, were not published, or were picked apart by researchers who could not believe their results.

    A few people have made that final argument, and I just don't see it as having any strength to it.
  19. currer

    currer Senior Member

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    If this back and forth argument is a reflection of the reasoning processes taking place in the research world, I am starting to think that the constraints of formally designed blinded studies working at the limits of viral detection will never lead to any conclusive or fruitful outcome.

    Is this the reason no-one can respond to the significance of Dr Snyderman's recovery from CLL and his biomarkers? What has happened to initiative and creative thinking?

    Research is trapped in a cul-de-sac.
  20. Bob

    Bob

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    If the contamination was from mouse dna, then I would agree with you.
    But the point about this 'contamination' (e.g. Hanson and Lo studies) is that it is not mouse dna, or any other recognisable dna.
    So for that reason, it seems that it is important to find out exactly what these novel sequences are, and where they come from.
    I imagine that some researchers are quietly working on it already, and that Dr O'Keefe isn't the only one to be taking a keen interest in it.
    The same applies to the XMRV 'contamination' in Mikovits' original study. If everyone had just written off the findings as contamination, which didn't need further investigation, because the results were 'random' and not reliably reproducible, then they would not have discovered XMRV 22RV1 in the cell lines.
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