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!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

NY Times story on BWG results & Science partial retraction of XMRV study

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by ixchelkali, Sep 22, 2011.

  1. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    265
    Long Beach, CA
  2. Wayne

    Wayne Senior Member

    Messages:
    2,201
    Likes:
    1,306
    Ashland, Oregon
    Hi Ikchelkali,

    Thanks for posting this. I actually thought the article was excellent, especially the summation:

  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    I thought this was an excellent article too. I will write the times to acknowledge his work. Let's keep supporting those who are accurate.
  4. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,302
    Likes:
    1,767
    Australia
    I don't like how most of the articles in the press seem to neglect the whole prostate cancer angle. It is not just the CFS-XMRV theory that is unlikely, but also the prostate cancer-XMRV theory.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,038
    Likes:
    882
    Concord, NH
    I don't think he's talking about our disease?! The headline says Chronic Fatigue, I was diagnosed with CFS not CF, get your story title/straight!

    GG
  6. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37
    No matter how the XMRV controversy shakes down this disease is now being portrayed in a way that is accurate- which if nothing else, is a major accomplishment.

    Just the clarification of simple fatigue and explanation of Post Exertional Malaise in the NY Times is truly a major milestone.

    Who knows how long it will take- but this thing is headed in the right direction.
  7. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    265
    Long Beach, CA
    GG, usually the author of the article doesn't write the headline. Newspapers usually have people other than reporters whose job it is to write headlines. I'm not saying you shouldn't object to the headline, just assign blame to the right place.
  8. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,116
    Likes:
    1,665
    Somewhere near Glasgow, Scotland
    Lets just hope this is genuine improvement of awarness, and not merely meant ot "Buy us off"
    ie, "pat the cripple on the head, and assure them everything is ok and leave them to rot thinking you care, which you don't, it's all a misdirection to keep them form making a scene"

    yes, I am that much of a cynic :p (and what's worse, I know all to damn well how the system can and does work, so I have grounds for such cynicism, lol.)
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,038
    Likes:
    882
    Concord, NH
    Thanks for the reminder, but I don't think this is good excuse for a Major newspaper in the US. I think it speaks poorly of the paper, which I do not really care for as it is.

    GG
  10. Battery Muncher

    Battery Muncher Senior Member

    Messages:
    211
    Likes:
    211
  11. Jemal

    Jemal Senior Member

    Messages:
    1,031
    Likes:
    60
    Person with ME
    or
    People with ME
  12. Doogle

    Doogle Senior Member

    Messages:
    196
    Likes:
    28
    No, I believe he just knows about the illness from others.


  13. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,975
    Cornwall England
    Title: 'Viral Theory Is Set Back in Chronic Fatigue Syndrome Study'

    'Dashing the hopes of many people with chronic fatigue syndrome, an eagerly awaited study coordinated by government health agencies has not confirmed a link between the illness and a virus called XMRV or others from the same class of mouse leukemia viruses.'

    'Results from another government-sponsored study of M.L.V.s, with a much larger sample size, are expected early next year. But Thursdays report appeared to leave little room for continued optimism. '

    For what its' worth I agree with that. Personally, I don't see how/why Lipkin should even proceed with his study. But I guess the money has been found and unless he is persuaded not to continue then he will. The chances of him finding 'X' appears remote but it depends on whether he is looking for 'XMRV' or anything else.

    'These results indicate that current assays do not reproducibly detect XMRV/M.L.V. in blood samples and that blood donor screening is not warranted, reported the new study, written by researchers participating the Blood XMRV Scientific Working Group. '

    To me that begs the question how on earth people can have been tested and found 'positive' for 'XMRV' in the first place. But then I am only a patient and not a scientist.

    'But the scientists also said they could not definitively exclude the possibility that levels of viral markers in the blood might fluctuate over time and become undetectable at certain periods.'

    This seems daft. I get the concept that if it ain't in me blood it could be hiding in me tissues - but the original study by Lombardi and all them test kits from WPI were about detecting 'XMRV' in BLOOD. An explanation would be great to hear sometime.

    'Also on Thursday, researchers from the original study linking XMRV to chronic fatigue syndrome, which was published in Science in October 2009, retracted a portion of their data but not their conclusions because of evidence of contamination in one lab involved in the study. '

    I am reading at the moment (in my slow 'CFS/ME-way' the actual BWG Paper and this partial retraction), but.... How the heck can they 'only' partially-retract? If only because of the name 'XMRV' the paper should be pulled. Seems daft to me and to Prof Racaniello et al after listening to his latest podcast just now.

    'Vincent Racaniello, a microbiology professor at Columbia University who has covered the controversy on his popular virology blog, said the XMRV/M.L.V. hypothesis was now dead. Its clearly time to move on in the study for the origin of this disease, he wrote in an e-mail message. '

    I couldn't agree more. IF something else is going on with regard to retorviruses and 'CFS' cohorts then let's see a NEW paper that establishes a link. But for now... move on to something else, like for example....

    'Recently, a panel of top researchers proposed a new definition of the illness that requires the presence of postexertional exhaustion, rather than the six months of unexplained fatigue required under the standard definition.

    The group also recommended changing the name to myalgic encephalomyelitis, a virtually identical illness long recognized by the World Health Organization. '

    ...PROVING that Myalgic Encephalomyelitis is the most appropriate name for a condition that is exemplified apparently by this PENE-thing which as yet is an UNPROVEN term invented to support an UNPROVEN criteria.

    Let's not jump from the flying pan into the fire. PROVE that inflammation (clinically defined inflammation) of the BRAIN and/or SPINAL CORD along with 'muscle pain' is apparent in a patients diagnosed with 'CFS' or 'ME' as they exist presently.

    PROVE that 'ME' is the best and most appropriate nomen for an illness that affects all of those patients currently diagnosed. PROVE that PENE (as it is defined in the ME-ICC) is real - clinically.

    We seem to be jumping from possibly one cause for all those diagnosed to a new definition that (without tests) simply sounds good and is likely to be more accepted by patients than Chronic Fatigue Syndrome.

    There is no reason why the symptoms of my condition cannot be clinically validated and THEN a criteria constructed around them. I do not see why a criteria without tests and a valid reason for the name should be even published.

    What if clinical tests do not support the nomen Myalgic Encephalomyelitis? I mean they haven't so far. What if PENE proves unsubstantiated or applies clinically (if such a thing is possible) to so few patients, that this whole 'new' criteria will not replace the existing one but has to stand alongside it (which is what I thought was happening anyway, I didn't think it was a replacement, but hey-ho)?

    Anyway, on the whole a very good article I thought :)

See more popular forum discussions.

Share This Page