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!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Interviewing Dr. Coffin

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Rrrr, May 6, 2010.

  1. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    264
    If you were interviewing Dr. Coffin, one of the most prominent retrovirologists in the world, what would you ask him?

    This is him:
    http://sackler.tufts.edu/Faculty-an...culty-Profile.aspx?id=32&c=129176339929226898

    http://home.ncifcrf.gov/hivdrp/Coffin.html

    I may have this opportunity next week. I am not sure if my scheduled meeting with him has to be off the record or if he will permit me to do it on the record.

    So, if you were interviewing Dr. Coffin, what would you ask him? (I should note that he told me he knows little about the disease, but he knows a lot about the virus.)
    _____

    Here is a recent article that talks some about him:

    Subject: res: Positive *XMRV-study* a matter of time -Dutch Press release

    <http://bit.ly/bPb6me>http://bit.ly/bPb6me

    esme
    European Society for ME- Research and Knowledge

    Dutch Press release: Positive 'XMRV-study' a matter of time

    Prague - May 3, 2010.

    Last October U.S. scientists presented a breakthrough around the research on chronic fatigue syndrome (CFS), which was published in Science.

    They found traces of the retrovirus XMRV in the blood of CFS patients.

    Thereafter, three groups of European researchers, including a Dutch group from Nijmegen, couldn't confirm these findings.

    However, at the 'Centennial Retrovirus Meeting' in Prague it became clear that the first positive 'replication study' seems only a matter of time.

    The June issue of the Dutch magazine Ortho will focus on the multi-day conference in Prague, which ends today.

    Especially in the corridors this new retrovirus was the talk of the day. Insiders agree that the negative XMRV-studies which have been published so far, were not exact replication studies.

    The several groups of researchers used techniques that differed too much from those used by the U.S. researchers.

    This is also true for a yet unpublished German study, where XMRV wasn't found in blood samples from CFS patients either.

    Recently the American scientist Dr. Judy Mikovitsmvisited several European research groups to help them with the proper laboratory technique.

    It is now clear that these visits are starting to pay off. During the Prague Conference Mikovits explained once more in great detail the complex methodology of the Whittemore-Peterson Institute (WPI), the National Cancer Institute (NCI) and the Cleveland Clinic.

    This methodology of culturing the virus is imperative because XMRV is only present in extremely lowmconcentrations in the peripheral blood.

    Dr. Francis Ruscetti of the renowned NCI -- an U.S. government agency -- told Ortho that he hopes this
    controversy will all die away in 2011.

    He is especially surprised about the fact that the investigators of the UMC St. Radboud at Nijmegen concealed in their publication that the Americans found traces of XMRV in the same blood samples from the Dutch patients.

    "I don't know how they get away ethically with this," said Ruscetti. "I don't think that is good science."

    Ruscetti pointed out again that the WPI, the NCI and the Cleveland Clinic applied four procedures in their research.

    "In those negative studies they only tried one."

    Ruscetti also ventilated his annoyance over what he calls the "whispering campaign" about contamination. According to the Nijmegen researchers, the Americans contaminated or polluted the Dutch blood samples.

    Among others Ruscetti is supported by Prof. Dr. John Coffin, who is linked both to the NCI and Tufts University in Boston.

    He is considered one of the most prominent retrovirologists in the world.

    "People have raised the issue of contamination," said Coffin. "But we don't really know anything about that yet. We don't have any evidence. A lot of the studies were done in fact at the NCI, in the lab of Francis and Sandra Ruscetti. They have a long experience with these viruses and are very carefull workers."

    Coffin emphasized once again that doing a replication study implies that it is performed in exactly the same way.

    "In none of the studies that have been published so far that were negative, the virus was cultured," said Coffin. "Only the Science-study did this, which is a very compelling point."

    Researchers from Nijmegen were not present at this leading conference.
     
  2. Sasha

    Sasha Fine, thank you

    Messages:
    8,378
    Likes:
    7,451
    UK
    Exciting opportunity, Rrrr! I'd ask him whether he thinks that nations would be wise to prevent people with CFS from donating blood at this point; and whether nations would be wise to make investigating the link between XMRV and CFS a research priority.
     
  3. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    264
    good questions, sasha!
     
  4. Kati

    Kati Patient in training

    Messages:
    2,052
    Likes:
    1,545
    well rrrrr how did you pull that off??? This is a great opportunity. Let me think of questions... Will get back to you!
     
  5. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    264
    i just called him and asked to meet. told him i have had cfs for 20 yrs and since he is down the block from me, would he be willing to chat.
     
  6. Esther12

    Esther12 Senior Member

    Messages:
    5,294
    Likes:
    5,602
    I'd ask for more depth and clarifications to the article you posted. I was pretty unsure about the headline - 'Positive *XMRV-study* a matter of time' and that made me a bit more sceptical about the way they were presenting Coffin too. He's always been very non-committal previously. It would just be great to hear him explain how he sees the CFS/XMRV thing currently - try to get him to say something more than 'wait and see' - even though 'wait and see' is probably the sensible answer right now.
     
  7. natasa778

    natasa778 Senior Member

    Messages:
    1,450
    Likes:
    1,289
    London UK
    Ask about why he thinks european studies failed to detect any xmrv - how did their methods differ from Science study methods and why he thiks xmrv so difficult to catch.

    Also what he thinks about the new antibody test developed by Petros and coworkers at Emory - it is likely to replace or be routinely used alongside the current WIP/VPIdx tests? Are there other promising commercial tests in development that would improve detection rate and lower cost of testing?

    Do they have a clearer idea at this point how/if xmrv could be causing pathologies in diseases that it has been associated with?

    Is anyone looking into human tissue samples for xmrv presence, especially brain/nervous tissue? any postmortem studies going on?
     
  8. Navid

    Navid Senior Member

    Messages:
    410
    Likes:
    58
    wow Rrrrr...you really are a powerhouse...good for you and good for us. thanks.:D

    ok, lets just suppose you test positive for xmrv and you have been sick with recognized symtpms of cfid's for 6+ years. you have tried numerous antibiotic and antiviral treatments over these years, only making you worse...what treatment (experimental, i know, risky, i know) would he recommend our doctors use to address the xmrv....drugs and dosages.

    tell him i think he's great....and now instead of wanting my son to grow up to be president (not really), i want him to grow up to be a great retro-viroligist.

    RV's Rock.
    :Sign Good Job::Sign Good Job:



    Good Luck and hopefully he'll give you permission to share his comments with the info starved people here : )

    Go Rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
     
  9. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    264
    excellent questions. i'll pick 5-10 to ask him. i hope i'm not bedridden that day.
     
  10. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Ask him how his thoughts have changed since the science paper, specifically on XMRV, and the XMRV CFS association.
     
  11. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Also what does he think of the WPI.
     
  12. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    One more, how does he feel the conference in September on XMRV will go. What will be the main talking points.
     
  13. Robin

    Robin Guest

    Ask if he realizes he's a rock star to us? haha j/k

    Press him for scuttlebutt about the HHS blood supply group studies and the CDC study.

    Ask him how much of consensus would be necessary to consider XMRV ----> CFS. One good follow up study? Several?

    And please tell him to tell Ruscetti he's a rock star too, and we're sorry people are being mean to him. :)
     
  14. caledonia

    caledonia

    Messages:
    2,969
    Likes:
    1,564
    Cincinnati, OH, USA
    My biggest question is how is it transmitted. So anything he could tell us about transmission would be great.
     
  15. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
    Likes:
    9
    myrtle beach, s.c.
    ask how we can get this into the national spotlight, so we can get more people knowledgable and hopefully more research money?!
     
  16. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Great point Robin! Dr. Coffin is a rock star to us. :victory:

    Please ask him what he thinks of the association of XMRV to Autism.
     
  17. flybro

    flybro Senior Member

    Messages:
    581
    Likes:
    5
    pluto
    yep definatly ask him that.
     
  18. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    Fabulous coup, Rrrr! I hope you feel well that day. I'd be tongue-tied and blushing in the presence of The Bearded One. :D

    My Qs:

    -How does he feel the situation compares to the early days of HIV in terms of federal funding/attention and interest from scientists? E.g., does he feel the science is moving faster or slower than with HIV?

    -How long does he think it'll be before we have validated, standardized assays for XMRV commercially available?

    - What would have to happen to prove XMRV is the cause of ME/CFS (or a subset of it), rather than a mere association?

    -Goff suggested that XMRV may not be replicating. Others have said it replicates slowly. What are the implications for treatment? Can a non- or slow-replicating virus still cause pathology?
     
  19. Kati

    Kati Patient in training

    Messages:
    2,052
    Likes:
    1,545
    I would like to know what his role is currently in XMRV research, is he an interested onlooker or is he participating to XMRV research?

    Transmission is a big thing for me as well.

    I wonder how much he can say and how much is embargoed...
     
  20. JT1024

    JT1024 Senior Member

    Messages:
    551
    Likes:
    325
    Massachusetts
    I second Kati's question.... Is he or his colleagues at Tufts actively researching XMRV?
     

See more popular forum discussions.

Share This Page