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!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

Lipkin bad news folks

Discussion in 'XMRV Research and Replication Studies' started by pollycbr125, Sep 17, 2012.

  1. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    I hope he makes a point of naming and shaming the UK and all papers involved in breaking embargo
    ixchelkali likes this.
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,442
    Likes:
    1,940
    London
    Not as pissed off as we UK patients will be today if this continues in the same way.......
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,291
    Likes:
    6,278
    USA
    You have my utmost sympathy. :hug:
    WillowJ and pollycbr125 like this.
  4. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    im pissed off already and its the calm before the storm :(
  5. Kina

    Kina Moderation Team Lead

    Messages:
    5,524
    Likes:
    4,050
    Ontario, Canada
    I personally have decided not to pay attention to anything until the results of the study have been published in the journal in question.
    justy, meadowlark, RL_sparky and 2 others like this.
  6. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,442
    Likes:
    1,940
    London
    You are lucky to have that choice Kina. If the UK reports are taken up then our media will be full of this spin. It communicates to families and they communicate to us. Imagine a host of aunties and cousins ringing to tell me it's "alright after all" or ringing my Mother when I don't answer the phone. My extended family only really reponds to crap things sadly.
  7. alex3619

    alex3619 Senior Member

    Messages:
    7,184
    Likes:
    11,244
    Logan, Queensland, Australia
    The journal release is today I think.
  8. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
  9. Kina

    Kina Moderation Team Lead

    Messages:
    5,524
    Likes:
    4,050
    Ontario, Canada
    My family is clueless about ME/CFS and really I am beyond caring what they think because they are so clueless. It is my personal choice to not get wound up in spin press articles until I see the actual results of the study. Show me the results because I know that journalists just love to make statements based on innuendo etc. My family only responds to crap and I ignore their crap. I want to know the results not what joe journalist has to say because he/she is looking for a by-line.
  10. alex3619

    alex3619 Senior Member

    Messages:
    7,184
    Likes:
    11,244
    Logan, Queensland, Australia
    The only reason to pay attention to the spin is because of the politics. It needs to be countered. Twenty odd years of spin has led to almost no research funding - we get scraps. It has also led to systematic abuse of many thousands of patients by the medical system. So its important, but it has nothing to do with finding treatments or a cure directly.
    WillowJ, leela, beaker and 8 others like this.
  11. K2 for Hope

    K2 for Hope ALways Hoping

    Messages:
    256
    Likes:
    330
    Jacksonville, FL 32258
    That's why we come here. We can get info, support, etc. All the things we don't get out "there"...
    leela and alex3619 like this.
  12. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    72
    u.s.a.
    If these spins on it hold up and if Lipkin contributed to spin making it seem like NO viruses could be related to CFS/ME (which seems ridiculous since there is accepted evidence of viral involvement with a lot of chronic illnesses and some cancers etc) well, if it looks like same stuff Straus and Fauci been doing for 25 years, this is what I will think: Lipkin made sure Mikovitz on board to add more credibility to demise of viral connection and knew she was going to get slandered by WPI and would be vulnerable so he offered a deal to the xrmv/mlv scientists, that they would go along with this even tho its purpose is to put off the leads for longer of common origin for a lot of health problems and he would then help them save face and thus their careers. If it plays out badly for us, then I will say wow, those UK blokes, who was that one guy at other site, started with a G, gerwin or something, said Ian was the "dediscover", they called it right.

    I mean I understand that "xmrv" as such isn't where its at anymore, but the lame suspicious part is if they are tryng to get headlines out there making it sound like no viral connections at all when it should just be contained to explaining the problems with xrmv research
  13. K2 for Hope

    K2 for Hope ALways Hoping

    Messages:
    256
    Likes:
    330
    Jacksonville, FL 32258
    From Simmaron Research via Facebook - I assume the "east" stands for US EST:

    "Watch tomorrow morning at 10:30 East for results of the NIH's multicenter study on XMRV in ME/CFS, led by Columbia University's Center for Infection and Immunity."

    http://cii.yewda.com/Blog.aspx?LOfRcb
  14. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,442
    Likes:
    1,940
    London
    Some of the newspaper links appear to be broken now. I'm assuming that "someone" has contacted them about breaking the embargo.

    It's not necessarily good news (apart from making them less likely to be seen by my family - phew!) as we already have a foretaste of how it will be treated by some UK papers. Unless that is, the same agency is also telling them off for their bad reporting.

    The same links may just be reactivated after the embargo has ended or they will disappear / be rewritten?
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,938
    Likes:
    4,912
    Sth Australia
    Is this the paper that at some point Lipkin didnt want to put his name too? or have I dreamed that?
  16. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    265
    Long Beach, CA
    Count on it.
  17. K2 for Hope

    K2 for Hope ALways Hoping

    Messages:
    256
    Likes:
    330
    Jacksonville, FL 32258
    The link brings you here to the following info:

    Investigators from the multicenter study on CFS/ME and XMRV/pMLV will discuss their findings and future directions.
    For attendance at the event, members of the media should RSVP by 9:00AM on Monday, Sept. 17th
  18. Kina

    Kina Moderation Team Lead

    Messages:
    5,524
    Likes:
    4,050
    Ontario, Canada
    Alex, I think I may be coming from a different point of view. I took a course in Journalism a few years ago and the major point was you need to find the thing that bothers people the most and cause contention. Basically, release a sexy article that pisses people off and you have done your job effectively form a journalistic point of view. Boring stories don't sell. We do get scraps. It's actually abhorrent and it pisses me off. I guess what I was trying to say was that I will consider the results of the study, I will listen to all points of view when the study is published but I will not consider what some journalist has to say probably based on some comment made somewhere on a blog that turns into a sexy by-line that may bring him two minute of fame.

    We do get scraps. Patients are abused. I have been neglected and abused and it is my choice to wait for the results and make my own decisions about what I want to think.
    rosie26, currer and K2 for Hope like this.
  19. Esther12

    Esther12 Senior Member

    Messages:
    5,262
    Likes:
    5,438
    That doesn't sound right to me. Something from dream-world I think.
  20. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    506
    Los Angeles, CA
    Although it feels like a futile effort most of the time, I *do* make a fuss about how these things are reported, because I know that the how the media portrays things colors a large portion of the public discourse, whether political decisions made at the highest level or the attitudes we encounter in our day-to-day lives. If we can't convince specific people, we can chip away at the conventional wisdom, bit by bit.

    Of course there are days (weeks, months) when I completely despair of that, and just put my head under my wing and watch Netflix and try to think about something else.
    ixchelkali and xrayspex like this.

See more popular forum discussions.

Share This Page