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Nature article about Judy Mikovits and XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Mar 14, 2011.

  1. Cloud

    Cloud Guest

    Meadowlark, your input is not boring in the least. Your objectivity is needed, especially in a situation like this where, imo, much is being misinterpreted. Responsibility for that is with the author of the article for the lack of qualification for the supposed quotes, and statements, with an apparent attempt for sensationalism.

    The parting of the ways between Peterson and WPI happened in 2010, long after the xmrv news release. Being in his office for full day visits bi-monthly through all of 2009 (27 visits), I was in the middle of xmrv news as it unfolded.....and based on that front line view of events, I am seriously doubting things transpired between Peterson and wpi as it's presented in that article. There is more to that story than what is told in this article.

    I think we need to be prudent with the speculation we put into print. I'm sure Peterson would look at this article, shrug and time for this, lets get back to work.
  2. Otis

    Otis Señor Mumbler

    I agree! I worked in an entirely different discipline but one that demanded perfection to an extreme degree, so I find your perspective very interesting and too hope you add in more insight.
  3. akrasia

    akrasia Senior Member

    Cort wrote:
    Proof, besides "your sources."

    And what of Suzanne Vernon's contention that the CDC never "intended" to find XMRV? That's a devastating view for an alumna of their program and a profoundly "political" statement. Or that the first thing Myra McClure and Towers did in the wake of their publications was to hold press conferences? Do you not think that they didn't have policy intentions in mind when they did their work and that this did not influence their views or choice of methodology?
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

    There’s actually a bigger problem with credibility than just Mikovit’s combatitive style, or even the prospect of XMRV being judge to have zero relevance. There are plenty of curmudgeonly and irrrascible characters in the scientific world, and most research scientists accept that opposing camps will trash each other’s hypotheses. The problem that Mikovits and WPI have is that they are tied to a mission statement that makes ‘dead ending’ almost inevitable and also makes a grossly unscientific a priori judgement about the illnesses that they are claiming to study.

    XMRV deserved to be studied, (whether it should ever have been connected to CFS is an entirely different question, and one that remains largely unanswered) but it was always probable that XMRV would have no identifiable disease associations. In an institution unconstrained by research outcome (explore, find some answers, publish, seek more funding, explore some more) the process of investigating XMRV might have been expected to continue until the picture is complete, whether or not illness causation is an issue. WPI are not established to do that – if XMRV isn’t causative of “neuro-immune disease” then for WPI it’s a dead end. And so it could be ad infinitum with every research route WPI decides to chase down turning out to be 'not the cause', which leaves WPI with an image of being either glory seekers or research dabblers, either way it does not inspire confidence among other scientists.

    Ultimately the WPI mission statement : Research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism is an albatross around the WPI neck which brings derision from virtually all medical scientists. Neuro-immune disease is a WPI brand name which has no scientific probity, to claim, without any prior evidence that ME/CFS, fibromyalgia, atypical MS, and autism are collectively of common cause or are in some way inherently related, is sheer tin foil hattery. I’m going to spam my own Blog because I’ve dealt with all this more fully there: Creating a Research base isn’t like buying a Football Team

  5. kurt

    kurt Senior Member

    Syracuse, Utah, USA
    Not only do I have ME/CFS, I have a disabled daughter with CFS, and a second daughter (teenager) with CF. I have a large family and also have healthy children, none of my three sons have CFS or anything like it. You won't find many people more personally interested in finding a solution for CFS than I am.

    This forum has a lot of members who are pro-XMRV and that is fine by me, I was initially very supportive of XMRV until I learned more and more about problems with the theory. With a background in scientific research in another field, and connections with the retrovirus research community, I became involved in the debate early and have become convinced over time that the odds that XMRV explains CFS are close to 0% at this point. So most definitely all CFS patients are NOT supporting the contention of Mikovits and WPI, and we don't have to support them to validate that we have CFS. I better stop at that to not offend everyone, and to be fair, this is just science. As I said earlier, Mikovits might do everything right and still be wrong, that happens ALL THE TIME in science.

    WPI is at least two years old now.

    The rest of your comment (that I did not include) was a very fair statement, Mikovits comments might have been misconstrued by a writer with an agenda, but I think you will find if you look back at everything she has said that it is indeed her belief that the disbelief of researchers in CFS is causing them to doubt her abilities to run proper studies. That is absolutely false, based on my contacts and based on following this situation the past 17 months. Mikovits appears to have generalized the outrage of CFS patients, which should be directed at a specific group of medical professionals who deny we have a biological illness, to researchers who disagree with her findings. I believe this is a serious error on her part. We have no contention whatsoever with any skilled virologists and retrovirologists studying CFS. Our problem is with governing agencies and some medical professions such as psychiatry that have taken advantage of the lack of understanding of CFS to promote their own agendas over top of us.

    I don't know of many scientists anymore who doubt that CFS is a physical illness. There may be a few older hold-outs clinging to their old psychosomatic theories, but they or their theories will eventually become extinct. I think Mikovits needs to stick to her cancer virology studies and leave the speculation of motives of her detractors alone. She should present data to answer them.

    I don't think fact checking is the problem here, rather Mikovits really does appear to believe there is some conspiracy against CFS or even against her in the scientific community. Maybe she has taken a cue from all the pent-up anger in the CFS community, but that is a poor response to a scientific challenge.

    I think this is right on target.

    I believe that was a comment Vernon made on the first CDC study, not this latest one which has a strong cohort, and even used the WPI PCR test design. I have a lot of contacts also with the research community and everything Cort said above is consistent with what I have heard as well. But those labs are not likely to publish those opinions.
  6. Esther12

    Esther12 Senior Member

    I think that calling CFS a 'neuro-immune disease' is pretty pointless. But no more so than calling it a 'biopsychosocial illness', and that's not caused trouble for Wessely et al. Mission statements are universally recnogised as PR nonsense anyway, I really hope the WPI's didn't cause other researchers to be dimissive of them. It would be rather silly if it did.
  7. asleep

    asleep Senior Member

    This is hilarious. ERV has unleashed her "skeptical" goon squad here to attempt full-blown character assassination of Judy Mikovits and the WPI. You'll have to try harder IVI.

    You make exclusive use of past tense when discussing XMRV, unmistakeably implying that it has been dis-proven. It has not been dis-proven, not even close.

    You make wildly unfounded claims like "it was always probable that XMRV would have no identifiable disease associations". Really? How so? So far, 100% of known human retroviruses have disease associations.

    You claim that the WPI loses credibility because of its mission statement and dedication to solving certain diseases. This is an absurd, illogical claim. If science operated under this idea, then virtually every single research and/or advocacy organization would be "tainting" the diseases and ideas they are investigating. Anything short of some amorphous, undirected, "science for the sake of science" institution (which doesn't exist) would be suspect. Does ERV know that her dedication to epigenetics is causing scientists the world over the deride her as either a glory seeker or research dabbler? I'm going to go out on a limb and guess that you aren't trolling patient boards for less socially maligned diseases (like Parkinson's or MS), telling them that their dedicated research institutions are, by your contrived definition, undermining their own work.

    You claim that the WPI loses credibility because it operates under the hypothesis that commonalities underlie a certain group of diseases. You in fact called this act of investigating a hypothesis "tin foil hattery." You have constructed a verbal paradox, whereby it is scientifically unacceptable to explore a hypothesis until it is proven and accepted. Good luck with that.

    Ultimately, your entire post is a crude diversionary attempt. Heavy on innuendo and ad hominem, light on anything resembling evidence or logic. It is an albatross around your neck that brings derision from those with functioning brains. ;)
  8. kurt

    kurt Senior Member

    Syracuse, Utah, USA
    I think you meant exogenous forms only. There are many endogenous human retroviruses (HERVs) that are harmless, and a few HERVs that are believed to be pathogenic as well. Also there are exogenous retroviruses that have been proposed to be harmful but later proven to not infect humans successfully. XMRV may be one of those latter, based on studies reported at CROI.

    MOD WARNING: Please tone things down In Vitro and Sleepy. Some of this language is getting inflammatory, we need to discuss the ideas without personal attacks and insults.

    In Vitro, I understand your points but your post was inflammatory. Nobody here or at WPI is a tin foil hat idiot... just not smart to make comments like that on this board.

    We need more even tempered discussion here. This is serious business and I think we all need to respect the people involved when we disagree. And even the experts disagree right now, so there will be people with a wide range of views here. We need this safe forum for discussion! Please help keep things even tempered, so we can hear all sides, all views. Thank-you.
  9. jenbooks

    jenbooks Guest

    Georgie, lol. You have to fact check everything. Even with lay science magazines on the newstand, the fact checking procedure is onerous. Do you think Nature could just assemble secondary quotes and not fact check them, with the status it has in the scientific world?

  10. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    there ARE vested interests who do not want ME/CFS to be proven to have a biological, treatable origin
    They are very powerful, but as this is not merely about a few specific individuals pulling the strings, but a larger messy mix about insurance companies and governments who wanted this disease and it's victims to "go away and not cost them any money"
    it's extremely messy and doesn't have one single "Dr Evil" ;)

    ergo, you WILL and HAVE seen biased press and other items against any such research/people in these fields.
    It's standard "dirty pool" tactics.
    Always keep that in mind folks
    Again: the tobacco companies did the same dirty tactics back in the day , and so have other industries, to cause Fear Uncertianty Doubt, so they can avoid being caught out, stopped or prosecuted for heinous deeds.

    just so folk get this reality I'll post this from another thread:
    now that is historical FACT
    go see similar sh*t that's been going on in relation to Gulf War Syndrome.
    Alas, any item on these topics has a chance of being biased (to put it mildly) by these bozos.
    So anything you read, take it all with a pinch of salt, folks.
  11. markmc20001

    markmc20001 Guest

    Cort, 2.7 Billion is a large chunk of change.... Do you have any numbers on how much was spent on bio-logical causes for CFIDS? I think it would make an interesting comparison. If you don't have that maybe a budget check on research dollars spent of other biological causes for disease. What is the total budget of the NIH to if you got that?

    Well shoot, while your at it, an audit would be nice. :O)
  12. omerbasket

    omerbasket Senior Member

    What's between not telling Dr. Peterson and overstepping the science?
    First of all - Dr. Mikovits is an angel. She has helped us enormously, but what some of you might not know is that she answers very personal emails - which are not going to be published and the only person that can gain from them is the one who sent the email - and she answers it fast. To this date, I haven't seen that from any other researcher, exepct for Prof. Racaniello - but that is another thing since to me he answered about my critisizm of his, and anyway he has a blog so it's more likely he will answer (I don't know what he does in his other hours, but I guess he is not as busy as Dr. Mikovits). For example, I've sent an email to Dr. Le Grice about a week ago, I think - and wasn't answered yet. I've sent a message to the CROI's emails about, I think, two weeks ago - never recieved an answer. Etc. etc. But Dr. Mikovits? Answered me many times about very personal questions, which she has nothing to gain from answering me about them, except for the joy that one has when he's helping another human being.

    So, to me, critisizing Dr. Mikovits as a person is like saying that Osama Bin-Laden is a saint.

    Now, regarding what's written in the article:
    1) It's not balanced. The one thing that is worse than making a completely one-sided article, is to make an article which tries to be seen as balanced, but with smart phrasing gets the reader in the direction in which the author wants him to go. It's full of cinisizm and of opinions of the writer. for example:
    Really? Quick to endorse findings that suppoer her work? Have you asked her if she quickly endoresed it? Do you know how much time it took her to endorse it?
    Anyway, full of cinisizm.

    Silverman worked with Dr. Mikovits only once - it was when Dr. Mikovits found the virus he discovered, in patients with ME/CFS, and wanted him to see if he can validate her results. It's very different from her very long connection with Dr. Ruscetti, discoverer of HTLV-1 (so if you have doubt about Dr. Mikovits, you'd probably want to know that the discoverer of HTLV-1 has full belief in her, and is working with her for years and years, even after she left the institute in which he works).

    I wonder - did he say that it rattled his confidence? Why, instead of having a quote of Dr. Silverman, we should trust the reporter that he understood Dr. Silverman correctly and wrote a thing that Dr. Silverman completely agrees with?

    Nice try. Why not mention that performing the tests is very expensive (requires human cell lines for each test, and to let it grow, as VIP Dx says, for 60 days in that cell line - and that's only the culture/PCR test, since the 549$ contains also the serology test)? Why not mention that if the WPI owns this company (and I'm not sure that he fully owns it), the money does not go to Annette Whittemore's pocket, but to the institute, which is a non-profit institute devoted to very sick patients?

    Why not attack her personaly, if you could? Actually, the whole article is a personal attack against her.

    Etc. etc. etc.

    2) The peterson thing: Altough this seems ugly, and I'm sure that it wasn't easy for Dr. Mikovits too, the steps that she took were, I believe, correct, and we now know it even better. I'll explain: Dr. Peterson seems like a very sympathetic doctor. I think that if he had a patient that he would have thought desperately needed antiretrovirals, and that therefore he should have told him that they found a retrovirus in the ME/CFS population - then he would have probably done so, and I think I would have done the same. But if this patient writes in forums, he might have written it, and the rumors would have been circulating around and the whole secret thing would have been at last partially blown. Dr. Mikovits probably thought that finding XMRV in ME/CFS patients would not make the health officials very much arfraid - but finding it in almost 4% of the healthy population can be a thing that would terrify those health officials, and might cause them to discredit her. That is inavinable, anyway, because the paper has to be published at last, but Dr. Mikovits did everything she could in order to make it as difficult as possible for them. This included, among others, to publish it in the most prestigous scientific journal in the world - "Science", confirming the results with two other labs, and yes, keeping it a secret until it is well-cooked. If she didn't want Dr. Peterson to know about it at that point, she couldn't have sent this paper to "Science" with his name on it - because he should have agreed to writing his name on the paper. I believe it was her initial thought - to write Dr. Peterson's name on the final paper, and anyway she must have done so because the samples were taken from his patients. She just didn't want him involved in the more early stages of this study - since, as opposed to all the others involved, he was the only scientist there that was treating patients. She also didn't tell it to Annette Whittemore, and look at Annette, I don't think that she has anything but love towards Dr. Mikovits. Dr. Mikovits made a tough call - but I believe it was the right one.

    You said:
    What same things? Big ego? where do you take it from? I don't see her big ego in this article, and anyway, it is your interpertation. Not telling to Dr. Peterson has nothing to do with ego - he was an author on the published study and she couldn't write him as author on a study that she didn't yet told him about (when the study was not published).
    Doing things in their own interest? What interest? What things?
    Overstepping the science? What's between letting Dr. Peterson know and science?

    By the way, I believe Dr. Peterson is as angel as Dr. Mikovits, and as the others in the WPI and their collaborators in the NCI.
  13. Mya Symons

    Mya Symons Mya Symons

    Thank You!
  14. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    Oh, so Montoya is working with him on looking for related pathogen(s). Cool.

    This sounds like the BWG:

    That does make sense to focus on a new exciting finding when it comes through, especially given the limited funding. Even though this is probably a multi-factoral disease which might need additional treatments even if XMRV was the ultimate cause, XMRV is an opportunity too good to pass up and we need it researched to the end, so we know for sure one way or the other.
  15. Ernie


    Well none of us really know the facts about any of this as we were not involved. Reporters don't always report or receive all the facts either. Hopefully one day we will know. Until that day we really can't speculate on any of it. Only time will tell I guess.
  16. SOC

    SOC Senior Member

    I certainly hope not, but we'll know more in the next few weeks. If people represented but not quoted come forward to refute the way their thoughts were presented, then we can be fairly confident Nature's fact-checking was not up to snuff. If everyone -- Mikovitz, Sliverman, Petersen -- don't object, then we probably need to accept that the author represented them fairly.

    That said, it is still poor journalistic practice, as I understand it, not to quote people when presenting their opinions. Also, their editorial excuse for using the incorrect "chronic fatigue" rather than ME/CFS or Chronic Fatigue Syndrome was feeble, especially so for a respectable scientific journal.

    I sincerely hope that Nature has not let its journalistic integrity slip, because that would speak very badly for science as a whole. I don't like the innuendo in the article, and I was disappointed to hear some of the "facts" that were presented. If the innuendo and the facts are honest, things are looking pretty grim for us overall.
  17. Ernie


    It's like I said who really knows if these are the facts, or if all the facts have been presented. It's pretty hard to guess when you just have snippets of this and that and could come from anywhere. I guess we may have to take a wait and see aproach.
  18. Cort

    Cort Phoenix Rising Founder

    Everybody should have this link (I have it bookmarked :)) - NIH funding for diseases and conditions CFS gets 6 million dollars a year. I think the NIH gets about 25 billion dollars a year.
  19. SpecialK82

    SpecialK82 Ohio, USA

    Ohio, USA
    What great info, will take hours to digest and analyze. Besides the dismal funding for CFS, one item that I noticed was estimated 2011 spending for Smoking and Health $336 M and Tobacco $339 M --- Really?

    Doesn't every American know that smoking is harmful to health, do we need more studies? Is it for education and awareness? Shouldn't cig tax pay for this.
  20. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    hehe no kidding ;) seen it in action: a relative got interviewed, I was there...what was reptored was VERY different from what actually was said.

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