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!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

April 7/8 NIH State of Knowledge Conference - watch online to show our support!

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Sasha, Apr 7, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,399
    Likes:
    4,793
    australia (brisbane)
    WHo's this Leonard jason guy, he seems to know what he's talking about. Good to hear someone like him talking.
     
  2. WillowJ

    WillowJ Senior Member

    Messages:
    3,136
    Likes:
    2,826
    WA, USA
    Lenny Jason has been around a long time. As you say, does know what he's talking about and truly one of the good guys. He's a psychologist with DePaul University. Attends the CFSAC meetings.

    His team writes a lot about definition (always very good) and name (showing that the title of CFS is indeed hampering the perception of the disease as serious among medical personnel). Has a paper analyzing the memorial list, and reportely a new mortality paper coming out.

    Published a paper demonstrating that the Reeves criteria includes primary affective disorders instead of CFS and noting that the incidence of "CFS" saw a 10-fold jump coincidentally with the intruduction of this rubric, and the new prevalence approximates that of "mood" disorders. In fact, 38% of those with MDD qualify as having CFS under Reeves. This is in a Disability Studies journal, but is amusingly not indexed on PubMed.

    Also published an important paper comparing pacing, anaerobic exercise, stretching, relaxation.
     
  3. Ernie

    Ernie *****

    Messages:
    118
    Likes:
    33
    I think it is.
     
  4. Ernie

    Ernie *****

    Messages:
    118
    Likes:
    33
    I think he may have been thinking out loud. He changed his position later in that conversation. Explaining how others are still working on XMRV including Lipkin and the BWG. But managed to say that his NCI study will be out soon. I can bet what that will find.
     
  5. Ernie

    Ernie *****

    Messages:
    118
    Likes:
    33
    Maybe it was the cough syrup.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,399
    Likes:
    4,793
    australia (brisbane)
    i think coffin is backed into a corner with people around him alot more knowledgable then he will ever be on the subject. he was poopin his pants, lol, with mass hysteria!!
     
  7. liquid sky

    liquid sky Senior Member

    Messages:
    367
    Likes:
    199
    There's a reason they want this event to have a date attached to it. It's to protect someone's liability. Mislead, confuse the facts and hope XMRV just goes away. I'm afraid it was a little too obvious. I absolutely could not stand the disdain that Coffin showed towards Mitkovis. He talked over her and refused to let her speak much at all. I sure hope the real truth will stand up some day.

    On the other hand, I thought I heard 2 Japanese studies that sounded promising.I also thought one guy stated something about cannabis receptors in the brain being involved? Did I imagine that? Something about in California they could bring the medicine to your house?

    My body woke up at noon today and my mind woke up about 3pm.
     
  8. liquid sky

    liquid sky Senior Member

    Messages:
    367
    Likes:
    199
    Oops. Just read the rest of the thread. Sorry for any repeats of thought. I see I wasn't imagining the medical marijuana.
     
  9. LJS

    LJS Insert Witty Comment Here

    Messages:
    207
    Likes:
    7
    East Coast, USA
    Huh?? How are people coming to these conclusions, I sometimes feel like I am on another planet. His reason to mislead and confuse the facts about XMRV in hopes that it would go away would be for what? He started studying it for the same reason everyone else started studying it because it sparked his interest, not to setup a super secrete government conspiracy to keep CFS patients sick. This has gotten so ridiculous that he had to make a comment about it. http://www.youtube.com/watch?v=b-1K7i4Sjvs

    I thought he made some compelling arguments against XMRV.
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,399
    Likes:
    4,793
    australia (brisbane)
    My comments come from the fact that he states contamination and when klimas said to him if contamination was a problem wouldnt the healthy controls have a high level of xmrv too. He dribbled off on a different tangent.

    i rest my case.
     
  11. LJS

    LJS Insert Witty Comment Here

    Messages:
    207
    Likes:
    7
    East Coast, USA
    A few months ago there was some in depth discussion about how this happened in the past, I can not remember the name of the researcher or the study. What happened there was the patient samples were handled more then the healthy control samples which in turn contaminated the patients samples at a higher rate.

    My main concern with XMRV is that a large majority of scientist can not replicate the WPI findings and some incredibly intelligent researchers with all the right intentions have tried and failed. So where does that leave us; we can not cling to the idea that XMRV is there and the cause of our illness because Dr. Mikovits says so. We have to look at the data for what it is and be open to the idea that maybe the WPI in not in fact finding real XMRV in humans and is finding a containment or something other then XMRV. We also can not demonize and sling all these personal attacks at researcher that find something different then what Mikovits finds, they are people too and just look at the data differently. It is the normal path of how science works a problem and part of the process.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,399
    Likes:
    4,793
    australia (brisbane)
    but there are others who have replicated the studies. Even in germany they found it in respiratory droplets, i dont know if this particular study has been replicated but it shows how others are finding it. It also depends on the type of patients they are picking, are they picking patients who just have depression as thats what alot of the CDC think cfs is. I think they should pick patients with poor nk function and other immune abnormalities, nk function is a common one, so i dont know why this isnt used as well.
     
  13. LJS

    LJS Insert Witty Comment Here

    Messages:
    207
    Likes:
    7
    East Coast, USA
    The upcoming BWG study and other future studies that funding has been dedicated to will attempt to answer this question by consolidating all the variables. Collecting all the blood at the same time, in the same tubes, and process them from start to finish fully blinded. If the WPI and NIH can not pick out XMRV in this setup it is highly probably they are not finding XMRV and something else is going on for example contamination. Until these studies are completed we really have no way of knowing what is going on but the arguments for contamination make valid points that must be taken seriously.
     
  14. dannybex

    dannybex Senior Member

    Messages:
    2,279
    Likes:
    582
    Seattle
    "Six studies, with thousands of patients..."

    What is Dr. Mikovits referring to in this clip (at 7:40 in) when she talks about 'at least six studies with thousands of patients from around the world'?

    http://www.youtube.com/watch?v=Dktu4RR5QEU&feature=channel_video_title

    I'm not exactly up to speed (in more ways than one), but haven't most of the studies involved small numbers of patients/controls? Is she perhaps talking about unpublished studies?

    Thanks in advance.

    d.

    p.s. Also, it seems like Coffin hasn't completely ruled out a retroviral link...he's just not sure about 'the virus we know as XMRV'.

    He goes on to say, "enough evidence has been presented that there is some infectious cause here and maybe another retrovirus is possible and it's worth continuing to do it..."
     
  15. Kate_UK

    Kate_UK Senior Member

    Messages:
    232
    Likes:
    228
    I thought there had not been any replication study yet?

    I didn't feel that the arguments against contamination were really answered by Dr Coffin. Maybe I missed something.
     
  16. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I think in one of the videos from the XMRV workshop last September Coffin said he thinks we can be pretty confident about XMRV playing a role in ME/CFS, only that he's a bit worried about how easily PCR can lead to false positives. Now he said it should be left behind.

    I don't understand what's going on but i don't like it and it's even pretty scary. This should be about science and the truth and besides that it's about something as irrelevant:rolleyes: as the health of the human race and what we mostly see is people fighting each other in such a way that at least to me it seems as if they basically care about their own career, their own interest. * that.

    If i look at the Coffin video it feels like a gathering of Mafia capos where everybody is making plans how to kill the others and get control of the whole thing.
    I don't want that sort of mentality deciding my fate.

    If Coffin turns out to be wrong, he certainly has done a lot of damage to his reputation. Would he take such a risk? I don't know. But even though i'm no scientist i think there's a lot that his hypothesis can't explain. What about the sequences Lo and Alter have found, for example? Can they be explained by recombination of preXMRV1 and preXMRV2?

    Many people say that XMRV is losing interest of researchers, but just look at all the XMRV-related events... University of Alberta, NYAS, this workshop... all in a couple of weeks. It does not look dead at all at this moment.
     
  17. Sasha

    Sasha Fine, thank you

    Messages:
    8,759
    Likes:
    8,129
    UK
    The original link to the agenda now just leads to a page with an error message on it. Did anyone get a copy of the agenda for today that they could post?
     
  18. Kate_UK

    Kate_UK Senior Member

    Messages:
    232
    Likes:
    228
  19. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I haven't reloaded the page yet, so i still have it on:

     
  20. Sasha

    Sasha Fine, thank you

    Messages:
    8,759
    Likes:
    8,129
    UK

See more popular forum discussions.

Share This Page