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Any news on Lipkin study?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Bevbh, Apr 27, 2012.

  1. SOC

    SOC Moderator and Senior Member

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    That is generous and thoughtful of Dr Lipkin and his staff. Researchers do not, as a rule, provide information to the public before the publication of their research. As a patient, I appreciate any efforts they make to communicate with us prior to publication. They do not have to do this for us, as much as we may want it.
    Little Bluestem, justy and barbc56 like this.
  2. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    There is, of course, another way to look at it. They are looking to improve their control of information. Although if that was the case, then perhaps Eco posting on the matter might be contrary to their wishes. Or is it?
  3. Enid

    Enid Senior Member

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    Bravo Dr Lipkin and his team ! Thank you all for the updates and progress here.
  4. Wally

    Wally Senior Member

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    Ecoclimber,

    I too have had an opportunity to talk with Dr. Lipkin, but only in person and not in relationship to the current status of any ME/CFS study that he is involved with. I have also read and/or listened to everything I could find on-line or in off-line discussions with people in the medical profession who have worked with him. I like many othernpeople are interested in understanding who he is and the possibilities of the advancement in research that he could bring to this illness. It is because of what I have learned about him that I believe he would want anything published about him to be accurate and accessible, especially if it is information that he believes should be released to the public. I also do have not ever said anything disparaging about with work, his integrity or his willingness to take on such an emotionally charged, politcally sensitive, but desparately needed area of research.

    I don't know your personal situation regarding this illness, but I do know that this illness is brutal both on people who are afflicted with this illness and those who are close to them. I hope that the misinformation presented in some of the things you have posted in this thread can be quickly corrected and we can move on from here try to keep information about this illness presented in as an accurate and thoughtful way as possible.

    Wally
    Wildcat, ikke2001be and ukxmrv like this.
  5. akrasia

    akrasia Senior Member

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    Ecoclimber wrote:

    I have been in correspondence with Lipkin for some time now. There is a lot going on behind the scenes that the ME/CFS community is not even aware of which would make a good sequel to Osler's Web and perhaps one day the story may be revealed. I don't need recognition or feel important. In fact, I work behind the scenes to be more effective. You can ask Cort about this as he wanted me to take a more visible role which I decline. I don't need any recognition as I have received enough in my lifetime. If I find something of interest for the community, I post it. I have more to say about this later.

    There are certain individuals in the ME/CFS community 'trash talking' and 'bad mouthing' Dr. Lipkin. That he is part of some grand conspiracy or shall I say conspiracies against the ME/CFS community.

    --—---------------------------------------------------------------------------------------------------------------------------------------
    First, I'd like to support Wally, who was only seeking clarity and disseminating information to the greater m.e world. It's not necessary to be a member of PR to view these boards and the information you claim to possess does not "belong" to you. It is too important for that.

    If as you say, there is a great deal of things going on behind the scenes, enough for a sequel to Osler's Web, then speculation about dark motives and institutional machinations, whether accurate or not, doesn't seem inappropriate to me. Your words betray a conflicted view. What this community desperately needs and deserves is as much transparency as possible. I have a feeling Lipkin understands this.

    This story will be revealed. There are many of us who are determined to demand accountability. The idea that you and only a handful of others can retain control of this information is both odious and absurd.
    currer, jace and Wildcat like this.
  6. August59

    August59 Daughters High School Graduation

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    Eco can either post or not post information. I have always considered "cutting and pasting" someone else's post as not showing much respect. If I wanted to all I need to do is ask for permission. I appreciate very much what Eco does for this form and would certainly hope he continues. Cutting and pasting may be against forum rules, but it shouldn't need to be. If you want please ask the author and if they say no then respect their decision. These forums run so much better when there is a lot of respect shown between members and guest. I don't think Wally meant any harm, but a private message asking permission would have been the respectable thing to do.
    ikke2001be, barbc56 and SOC like this.
  7. Wally

    Wally Senior Member

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    August59,

    I am trying very hard to have some semblance of patience and decorum with what I believe has been posted inaccurately about me. Please, before you or anyone else continues to repeat Ecoclimber's allegation about me. Do your own investigation about this matter and I assure you that you will find no factual basis to support Ecoclimber's accusations/implications against me. Please note, this matter is currently under Forum Moderation review.

    Wally

    P.S. Thank you to all the Forum members (who may not even know me), but who have reached out to express their concern and support that I not be publicly flogged without a fair trial. :)
  8. Bob

    Bob

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    I just want to point that out that my experience interacting with Wally on this forum and elsewhere has been nothing but pleasant. He has always been polite, considerate, helpful and of good motivation. I really can't imagine that Wally has intentionally caused any problems, although I haven't been following events on the other forum. We all copy and paste information without asking permission, at times, just to share information. Pretty much all of us. So I just wanted to put in a good word for Wally, because in my experience he's been nothing but polite and courteous.

    It can be quite distressing to come under attack on the forum, so I don't think any of us need to add to what Eco has said.
  9. Mark

    Mark Acting CEO

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    Members retain copyright over anything they post on this forum, and also grant an unlimited and irrevocable licence to Phoenix Rising over that content. For more clarification on that, see the Terms and Conditions in Forum Rules Explained.

    This means that content that members have posted here cannot be taken by somebody else and reproduced elsewhere for commercial gain. However, as I understand it (and I am not a lawyer), where the content has not been made available commercially by the poster, there would be nothing illegal in taking that content and quoting it elsewhere with comment - indeed, even if it were information that had been commercially exploited, it would be quite legal and indeed normal to do this provided that it is only an extract of any article that is quoted, and it is attributed. That is exactly what we all do with quotes from articles in newspapers etc: that is copyright information but extracts from it can be legally reproduced elsewhere.

    In the case of reproducing comments from a private conversation (email or letter, for example) it would be generally considered really quite rude to reproduce that content anywhere (even privately) without asking the permission of the person who sent the private correspondence. However I think (but I am not sure) that this would not be illegal (there may be some circumstances where it would be).

    But as for quoting posts from one forum on another forum, maybe I'm missing something, but I don't really see anything unusual or untoward in that. One could link to the original post - this is a public thread on the internet, after all - and what would be wrong with that? If one quotes that "Ecoclimber said this on forum x", well, it was said on a public forum and I wouldn't have expected that to be a particular problem. It would be a different matter if it was an article or blog post that was reproduced in full somewhere else; in a case like that it would be morally and perhaps even legally necessary to ask for permission. But I wouldn't expect that quoting somebody else's public forum posts here somewhere else, without permission, should be a major problem. I doubt that Wally saw it as a rude thing to do, and I wouldn't see it that way either, really.

    Of course, if one were also bad-mouthing the person somewhere else, and criticising the comments there, while engaging in a quite different way on the original forum, then that would be quite rude. If Eco's complaint is about the actual comments that Wally made about him or his posts somewhere else, then that's different. But then, in that case, Eco might quote here what Wally said on the other forum, in the same way, and I would personally think that to be quite reasonable to do also. Though of course, if the comments elsewhere breached this forum's rules, that would be a problem.

    So perhaps I'm missing something here, and Eco or someone who agrees with him on this issue can tell me why it's rude to quote elsewhere what somebody writes on this public forum. I don't get it - and I am sure I've been quoted elsewhere by now, and that doesn't bother me, I expect it, I know I'm posting publicly. The only time it did hurt and felt rude and a betrayal was when it was a private communication that was posted publicly, and that's where I personally think the line is on this question. Quotes from what we post here publicly can be posted elsewhere, both legally and morally, within the confines of copyright law; that's how I see it, am I missing something here?
    ikke2001be likes this.
  10. Mark

    Mark Acting CEO

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    And I suppose I should add that I realise that Wally has said that he did not actually cut and paste the comments elsewhere as Eco has claimed. I don't see anything wrong with it even if Wally had done so, and so I don't understand Eco's complaint against Wally in either case. It's correct that the moderation team are looking into this, and it does look to me like those comments could be construed as a personal attack aimed at Wally, so please could Eco clarify the reason for those comments, with evidence, either publicly on this thread or by starting a private conversation with me about this. In particular, Eco, when you say: "When I provide information that may be of interest to the ME/CFS community, I don't expect it to be cut and paste or banter about on other forums" I don't understand why that is: when I post here, I assume the opposite: anything I say might be quoted elsewhere, just as it might be with anything else I said in public. What's the confusion here? This is a public forum.
    SOC likes this.
  11. August59

    August59 Daughters High School Graduation

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    Wally, I promise my post was not not personal, but about posting in general and it is obvious you are a nice guy by the support from members whose opinion I hold in high regard. I apologize in any way if you were offended and it was not my intention. Just curious as to where you were from though? That's one thing I don't like about the new setup so far is most of the people had their location show up under their avatar, but it doesn't do it anymore. I suppose we could add it to the comments.
  12. Mark

    Mark Acting CEO

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    If you click on somebody's avatar a card pops up with their details. There is already a thread in Tech Support about that.
  13. August59

    August59 Daughters High School Graduation

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    Learned something new today! Thanks Mark
  14. Mark

    Mark Acting CEO

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  15. LisaGoddard

    LisaGoddard Senior Member

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    Hi Eco, Do let us know if you hear anything.
    Thanks, Lisa
  16. snowathlete

    snowathlete

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    Thanks everyone who has shared information with us, I for one, appreciate it very much.
    I have always been very impressed with Dr Lipkin, not just his work, but the way he conducts himself overall. It will be great if we could get some kind of regular official update or something, i hope for that, but if we got anything even close to that we would get more than anyone else in a similar position gets. So, if we dont get that, i can live with that and just wait patiently.

    Isnt it great that there is hope with Lipkin and others looking at our illness and trying to figure it out. When i have a bad day i think to myself, soon, sometime soon, one of them will find something that will matter and lead to a fix. I dont know about anyone else, but ive had a lot of bad days recently, so thank God for that!
    Little Bluestem likes this.
  17. August59

    August59 Daughters High School Graduation

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    With Montoya's pathogen study complete I sure do wish we could get an idea as to when it might be published.
  18. hixxy

    hixxy Woof woof

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    Which one of the studies is investigating non-viral pathogens?
  19. August59

    August59 Daughters High School Graduation

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    I think Dr. Montoya's study was looking at a variety of pathogens (this may be the wrong word for me to use). I'm sure some are viral, but it just seemed as if there were other pathogens in the list that were more of what I consider bacterial. There were a few on the forums that were part of the study and I think they knew what they would be tested for, but they were not going to get the results of their personal test. Maybe one of them will pick up on the conversation and give some input.
  20. Rrrr

    Rrrr Senior Member

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