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!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    I will be up quite naturally. Yes I get up very early - the time between 5am and 8am being the best part of the day.

    I think quite probable that they have found something - I cannot understand the eagerness to free themselves of the embargo so immediately otherwise.

    And SOC made a very good point, I think, how the authorities behave will reveal whether they respect the patients' suffering from this illness or not. Empty promises or spin will be rapidly detected by the online community.
     
  2. beaverfury

    beaverfury beaverfury

    Messages:
    436
    Likes:
    436
    West Australia
    I just reached deep inside for some prime beaverfury gnosis, which can be defined as neither logic nor intuition.
    A force beyond mere human reckoning or explanation. .....And ......i guess its about 12pm Australian time!

    Feel free to correct. Beaver gnosis is not an exact science
     
  3. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    9:01 PM here on the West Coast - spiffy. Lately that's about the time I usually wake up from my afternoon nap. (I wish I was kidding about that.)

    I'm comfortable that every effort has been expended on this study, that it will have been thorough and conscientious whatever the results turn out to be, and that there is no conspiracy to suppress information or anything like that.

    It does make me uncomfortable to call the results of any study "definitive" since of course nothing in science can ever be "definitive." I think the choice of words is semantically inappropriate and does have a whiff of trying to "calm down" the community, which is unfortunate. I don't think this choice of words is a sign of anything sinister, just a misguided effort to be reasurring.
     
    beaker, SOC and currer like this.
  4. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    p.s. With all our (justified) complaining about poor science journalism, nobody should be complaining about advance information being made available to the press. When science journalists are actually doing what they're supposed to be doing, they need the advance time to write up their early stories, get background and comments, etc., so they can file reasonably informative stories.

    Otherwise, the story would first break with NOTHING but regurgitated press releases (instead of just mostly regurgitated press releases) because that's all anyone would have at the time the study is published.
     
  5. TessDeco

    TessDeco

    Messages:
    20
    Likes:
    21
    Maybe Dr Racaniello and Dr Lipkin just want to sit down and discuss the results of this research without the media being there. Maybe they wanted a more casual setting than a press conference so they can convey the findings in a manner more easily understood by the public and patients. I'm sure they are aware of how highly anticipated these findings are and I'm grateful they both are willing to stay up so late and get this information out as soon as possible.

    I don't expect these two men to say much about how they view the patient community. This is not a test to see if these men have respect or concern for patients. I think they are going to talk about the science and how research can proceed forward. If they didn't care, Lipkin would not have agreed to oversee the study and Racaniello would not have arranged a TWiV episode at 1201 AM!
     
  6. Bob

    Bob

    Messages:
    8,598
    Likes:
    11,536
    South of England
    12.01am EDT = 2.01pm Sydney 18th Sept
     
    August59 and ukxmrv like this.
  7. waiting

    waiting Senior Member

    Messages:
    216
    Likes:
    245
    Here's a CORRECTION to the time of the TWIV podcast -- (just posted to XMRV Global a few minutes ago)

    "
    Please note there has been a correction, Dr Racaniello's podcast will air at 12 noon and not 12:01 AM.

    The embargo is lifted at 12:01 tonight.



    http://www.research1st.com/2012/09/16/coming-soon-xmrv-results/
    [​IMG]
    Coming Soon: Results of Multicenter Study of XMRV/pMLV
    www.research1st.com
    The much-anticipated results of a multicenter study of XMRV/pMLVs in CFS/ME are to be published on Sept. 18. Here are links for where to "
     
  8. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    Ah, that makes a lot more sense. :) Follow the official press conference with a more informal discussion with Dr Lipkin. It should bring out some of the scientific details that might not be addressed in a general presentation to the press. Nice decision on the part of Dr Racaniello.
     
  9. Sasha

    Sasha Fine, thank you

    Messages:
    8,465
    Likes:
    7,565
    UK
    This is up in a few minutes, isn't it? What do we have to click on? Anything? Or will it just start playing? I can't even see a mention of Dr Lipkin on the Twiv site.
     
  10. Sasha

    Sasha Fine, thank you

    Messages:
    8,465
    Likes:
    7,565
    UK
    This is up on the site now.
     
  11. Sasha

    Sasha Fine, thank you

    Messages:
    8,465
    Likes:
    7,565
    UK
    Argh, can't get it to play, though. Anybody managing it?
     
  12. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
    Nope - download shows "no file". Don't think it's there yet.
     
  13. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,977
    Cornwall England
    No I tried too. Will leave it till tomorrow. Too much already absorbed for one day - and I still have the paper to read and digest :)
     
  14. Christopher

    Christopher Senior Member

    Messages:
    466
    Likes:
    179
    Pennsylvania
  15. TessDeco

    TessDeco

    Messages:
    20
    Likes:
    21
  16. TessDeco

    TessDeco

    Messages:
    20
    Likes:
    21
    Definitely worth a listen to this TWiV! Dr Lipton is very candid and supportive of Mikovits!
     
    merylg likes this.
  17. Simon

    Simon

    Messages:
    1,470
    Likes:
    4,684
    Monmouth, UK
    Full transcript now available courtesy of mecfsforums

    A few excerpts, the first just because it made me laugh:


    Key quotes from and about Judy Mikovits

    Comprehensive plans for future CFS research
     
    Sasha likes this.
  18. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    Lots of info in this big paragraph so I've separated out some sentences and bolded important bits for ease of reading. While there's nothing new here, it really lays out how much is being done with the HFF funding.

    I decided to break it out for ease of reading.
    Two critical things we need.

    They're not just hunting pathogens, but any clues or insights in several critical areas -- pathogenesis, and biomarkers for both diagnosis and treatment.
    Dunno what this means, but it sounds important. ;)
     
    Kati, Simon, Sasha and 1 other person like this.
  19. Bob

    Bob

    Messages:
    8,598
    Likes:
    11,536
    South of England
    Thanks for the info, SOC.

    After listening to his interview, it seems that Lipkin is is carrying out a really comprehensive study, and doing all the essential tests in his pathogen study, and is looking for known and unknown pathogens. I was really impressed with what he said.

    I might have got it wrong, but I think that the only test he said he isn't doing is exploring the microbiome (microbial flora.)
    Although I think he said he is taking faecal swabs, looking for pathogens.

    Proteomics is the study of proteins. It means that he'll be looking for unusual proteins, as well as DNA and RNA.
    If unusual proteins are discovered, then I suppose they would need to find out where they are coming from, and that could lead to further discoveries.
     
    SOC likes this.

See more popular forum discussions.

Share This Page