1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

12:01am Tuesday, Special Episode of TWiV: Dr. Racaniello will post interview featuring Dr. Lipkin

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by waiting, Sep 16, 2012.

  1. waiting

    waiting Senior Member

    Messages:
    206
    Likes:
    226
    "From CAA (via XMRV Global Action Facebook website): The results of the multicenter study on XMRV/pMLVs in CFS/ME will be posted online in the open access journal mBIO at 12:01 a.m. Tuesday and the press embargo lifts at that time. Dr. Vincent Racaniello, Columbia virology professor and host of "This Week in Virology," will post a special episode of TWiV featuring Dr. Ian Lipkin, coordinator of the study, at 12:01 a.m. on Tuesday. TWiV site URL: http://www.twiv.tv/"

    [post above appeared on XMRV Global Action's Facebook website an hour ago -- from CFIDS Association of America]
    CJB, August59 and Sasha like this.
  2. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,240
    USA
    Hurrah! I may stay up just to see that. Do we know if that's 12:01am EDT?
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,616
    Likes:
    5,439
    Albuquerque
    Vincent Racaniello Correct, 12:01 Eastern time.
    SOC likes this.
  4. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    404
    Upstate SC, USA
    I'll be up for this one!! Seems a little odd now that the press conference is scheduled for Teusday morning at 10:30am.

    We get to here it before the press!!!
  5. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    what time is that UK time please ? I have to say I find this little chin wag with Racaniello and Lipkin before the press conference a rather odd state of affairs is this to soften the blow ? Racaniello has already made his rather blatent views on XMRV and retroviral involvement in ME/CFS already . Don't know about anyone else but I am dreading Tuesday and the no doubt press onslaught thats about to follow . Sorry to be negative but nothing about all this exactly fills me with hope . Meanwhile folk are getting sicker , folk are dying . I also do not like how this study has been labelled definitive . Since when has science ever been definitive , science moves forward daily with new discoveries made all the time if it didn't the likes of epilepsy and MS would still be deemed psychiatric disorders and they would still be blaming stomach ulcers on stress !
    Adamskitutu, liquid sky and currer like this.
  6. liquid sky

    liquid sky Senior Member

    Messages:
    350
    Likes:
    156
    It amazes me how Lipkin has repeatedly said he wanted this study to not be called the "Lipkin" study, but by the names of the researchers who were involved. Now he is going to go ahead of the researchers who already have a conference set up the next day. What's up with that?
    Adamskitutu and currer like this.
  7. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    773
    Racaniello couldn't wait to jump in line behind the Paprotka paper, and yet Paprotka is a very flawed and tendentious paper, which "proves" nothing about the origin of XMRV.
    I do not trust Racaniello, I'm afraid.

    This turn of events is very worrying.
  8. Kati

    Kati Patient in training

    Messages:
    1,902
    Likes:
    1,110
    currer "this turn of event is worrisome"

    Well, Dr Racaniello is not responsible for the study results, just for sharing the news and provide his point of view as a virologist and discuss with Dr Lipkin.

    What I personally find worrisome is patient expectations of this study, especially the expectation that they will have found "it". This leaves lots of room for extreme disappointment, anger and hopelessness.

    The study results are in, we just don't have acess to them yet. And already certain people are ready to point the finger at scientists, physicians that handpicked the research subjects, the study design and methodology.

    That is worrisome.
    beaker, Marco, SOC and 1 other person like this.
  9. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    773
    Well I would like to read the study first.

    The point I am making is that I found Racaniello selectively biased against the XMRV work once Paprotka was promoted as "the truth". But it was not - it was very poor science. So I have my doubts about Racaniello's stance.

    I dont mind science - but there has been too much politics in this over the last couple of years for me to feel much trust.
    beaker, Adamskitutu and pollycbr125 like this.
  10. Bob

    Bob

    Messages:
    7,959
    Likes:
    9,928
    England, UK
    5am UK time

    Any UK folk going to be up at that time? :ill:
  11. Kati

    Kati Patient in training

    Messages:
    1,902
    Likes:
    1,110
    This is a rare advantage that us on the west coast have, it will play at 9PM tomorrow.
    CJB and camas like this.
  12. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,240
    USA
    Dr Racaniello is simply getting in first with the news by running his TWiV episode the very minute the embargo is lifted. There's no rule that he needs to wait for the press conference. I suppose there might be a professional courtesy issue involved, but since when does the media (and that's what Racaniello is being in this case) care about professional courtesy? We can speculate about his motives for getting in first, but we won't know until we see the episode and maybe not even then.

    Dr Racaniello certainly believes there's something valuable to be said, or he wouldn't be rushing to be the first to say it. That's why I'm planning to watch. I'm not expecting there to be anything amazing that will change our medical situation in the next few years, but I could easily be wrong. What I'm actually expecting from this TWiV episode is to finally get a feel for Dr Racaniello's and Dr Lipkins' view of the patient community. How they handle this will say a lot about each of them and their respect and concern for patients.
    beaker and currer like this.
  13. Esther12

    Esther12 Senior Member

    Messages:
    5,182
    Likes:
    5,179
    I got lucky. That's the time I normally feel like a virology lecture.

    There is already so much evidence against XMRV's association with CFS, that another study showing Mikovits etc could not distinguish between blood samples from CFS patients and healthy controls will be as definitive as it's possible to be. Nothing is certain... maybe the moon is not really orbiting the Earth and it's just an elaborate illusion, but I think it's fair for people to say that another solid negative result will make it impossible for people to reasonably claim that CFS is caused by XMRV.
    barbc56 likes this.
  14. Esther12

    Esther12 Senior Member

    Messages:
    5,182
    Likes:
    5,179
    My suspicion is that there's concern about conspiracy theories, so they want to do everything they can to explain the results to patients, and answer queries/concerns quickly. That would explain these results being given significant attention, even if they're of little interest to scientists.
  15. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    404
    Upstate SC, USA
    I have no feelings about which way it it will go. I have never hung my hat on the XMRV theory anyway just because I am a very cautious persion by nature. I'm not going to surprised which ever way it goes. I don't believe any conspiracy theorys are going to be at play. I'll take what they say as being the best that they could possibly do within the confines of the study.

    I imagine there will be some of these researchers that will not be completely onboard with the decision and other may have run across something that they want tp pursue beyond the study.

    Even if they do or don't find XMRV or pMLV's to be present and if present are or are not causual (but if I'm thinking correctly this study was not looking anything to be causal??).

    What I hope for from a very minimum is that it doesn't leave us just dead in the water and that there was something found that may be a strong catalyst for further studies.

    We know that there is something there that's going on and causing us to feel so terrible for so long. There are some things that I definitely wouldn't want it to be, but I hope with all the studies that are in progress that there is a major break (or breaks) that can pinpoint the problem and lead us towards treatment as absolutely as quickly as possible.
    barbc56 and SOC like this.
  16. Bob

    Bob

    Messages:
    7,959
    Likes:
    9,928
    England, UK
    In terms of the press and media reporting, it's normal to embargo something like this untill a certain time. Making the 'release' time 'midnight' is practical. And it gives people time to read the paper before the press conference.

    I'm not happy about the media being given access to the results before the public, but it is normal practise.

    Yes, I have a feeling that the research might be more thorough than we were expecting, and that Lipkin has tried to satisfy patients' concerns and questions. I might be wrong, but I have a feeling that Lipkin doesn't want to leave this issue unresolved. And I also have a feeling that he has a good relationship with Judy, and that she will fully endorse and support the results. I always understood that she was fully engaged with the project, and agreed to the methodology. Anyway, I think it's going to be an interesting press conference, whatever the results.
    currer, ukxmrv and SOC like this.
  17. barbc56

    barbc56 Senior Member

    Messages:
    1,361
    Likes:
    721
    I agree 110%!!! As I said in another thread I find all this tiresome. Time will tell.Thanks.
  18. barbc56

    barbc56 Senior Member

    Messages:
    1,361
    Likes:
    721
    The moon revolves around the earth? You learn something every day.:lol:
  19. Mark

    Mark Acting CEO

    Messages:
    4,515
    Likes:
    1,932
    Sofa, UK
    :lol::lol::lol:

    Yeah, I'll probably be peaking around that time too!
    currer likes this.
  20. beaverfury

    beaverfury beaverfury

    Messages:
    425
    Likes:
    428
    West Australia
    12.o1 am.USA. 5.01am UK. Right. Um, i cant figure out time meridians.

    Whats that in Horsetrailer ? (yes, i am dumb. .and i just tried for half an hour)

See more popular forum discussions.

Share This Page