The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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. bullybeef

    bullybeef Senior Member

    North West, England, UK
    I emailed him back in October when the ME/XMRV link story broke. I asked him some personal questions, and he amazingly replied, twice!! I haven't since bothered him.

    But he did ask me to email him again if I had any questions. A very personable, and down to Earth chap.
  2. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

    Matlock, Derbyshire, Uk
    Like you Kati, I'd like to know whether he is , (or is thinking about becoming) involved in XMRV research.
    His involvement would obviously be a big endorsement of the work done so far by the WPI.
  3. subtr4ct

    subtr4ct Senior Member

    Here's one that I haven't heard anyone talk about at all (except for speculation re: autism), but may mean a lot to some of us here. Given what he knows about other retroviruses, what might be the implications of XMRV infection in children as they develop, and what special considerations should be given regarding their treatment?
  4. anciendaze

    anciendaze Senior Member

    questions for Dr. Coffin

    Ask him if he has a list of "illnesses of unknown etiology" he thinks about when a new human virus turns up, particularly one which is hard to detect.

    Examples, beyond CFS, might include MS, Guillian-Barre syndrome, or even Reyes syndrome, for which symptoms of some cases might be mistaken for CFS. What would he look for to clarify a cloudy diagnostic picture and remove conditions from a diagnostic "wastebasket"?

    (We wouldn't mind getting well as a result of a life-saving discovery about a disease traditionally considered more serious.)

    Also, doesn't the unusual genetic simplicity of XMRV make it a good vehicle for laboratory research?

    Is there a particular biological process research on this virus might elucidate?
  5. Cort

    Cort Phoenix Rising Founder

    Ask him if researching a virus in CFS is different from researching a virus is say multiple sclerosis.
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    I would take ancien's question and ask it a different way:

    If you were given unlimited funds to research possible human illnesses caused by XMRV, in consideration of what is now known about how the virus acts, where it is found in the body, and your knowledge of other retroviruses, what illnesses would you study?

    This retrovirus seems to go "dormant," that is it has periods of sitting in the cells and not actively replicating or floating around in the blood. Is this unusual for retroviruses? Is there another retrovirus that has that characteristic?

    If a comparison is made for public understanding of the illness, would you say XMRV is more like FeLV or HIV or another retrovirus?

  7. vdt33


    Thanks rrr for doing this!!! Ask Coffin if he has seen the research article on XMRV's preferred places for inserting itself into cellular DNA:

    The article title is: Fidelity of target site duplication and sequence preference during integration of xenotropic murine leukemia virus-related virus (see abstract below).

    This article would seem to provide evidence for a causal link between CFS and XMRV because the retrovirus' preferred places for inserting into the cell's DNA are in the CREB and NFAT genes. These are genes that perform functions that are disturbed in CFS patients.

    Below are some notes I took on Gerwyn's analysis of this research article.

    [Gerwyn, help me out!!]

    Gerwyn on XMRV DNA Target Sites

    NFAT genes regulate our automatic body processes that are controlled by the autonomic nervous system. If these becomes dysfunctional then we are left with the neuroendocrine symptoms of ME/CFS --

    Sensitivity to lights
    Sensitivity to sound
    High resting heartrate
    Postural Orthostatic Tachychardia Syndrome (POTS)
    Poor temperature control and so on.

    The organic thermostat that controls all these functions is the hypothalamus in the brain. When any function such as heart rate strays outside the normal range, this is detected by the hypothalamus and brought back into normal ranges by the action of the pituitary gland and the Adrenal cortex (and medulla).

    If this control system breaks down, our autonomic functions go haywire.

    The "molecular thermostat" of the immune system is the NFAT genes (amoung others). The retrovirus XMRV inserts itself into the part of our DNA that contains these genes, the retrovirus XMRV can act as a "molecular dimmer switch" for this gene and affect the levels of its activity and in turn the levels of various chemical components of the immune system.

    One example would be that if one of the NFAT genes was upregulated by the "dimmer switch" being turned up, then the level of circulating cytokines would be high. There would be chronic levels of inflammation in multiple body systems.

    This would lead to a number of consequences:

    Raised levels of abdominal fat

    Impaired Glucose tolerance and increased insulin resistance

    Alzheimers type symptoms

    Cardiovascular abnormalities

    Increased risk of stroke

    Postural Orthostatic Tachychardia or Hypotension

    Impaired blood flow to the brain.

    These increased cytokine levels (interferon and interleukins) can lead to Metabolic Syndrome.

    Raised interferon levels lead to hyper stimulation of the Tumor Necrosis Factor (TNF) alpha gene. This can lead to high levels of Nitric oxide which in turn depletes glutathione directly and indirectly, damaging mitochondria and creating a partial block in the methylation cycle.

    Raised TNF alpha leads to muscle fatigue and pain.

    This also reduces BDFN gene expression (also caused by blocking CREB genes) reducing fat oxidation and further compounding problems with fatigue, cognitive problems like memory, dyscalculia, dyslexia and so on

    CREB and NFAT co regulate each other just to make life really interesting!!!!


    Fidelity of target site duplication and sequence preference during integration of xenotropic murine leukemia virus-related virus


    PLoS One. 2010 Apr 20;5(4):e10255.

    Kim S, Rusmevichientong A, Dong B, Remenyi R, Silverman RH, Chow SA.

    Biomedical Engineering Interdepartmental Program, University of California Los Angeles, Los Angeles, California, United States of America.

    Xenotropic murine leukemia virus (MLV)-related virus (XMRV) is a new human retrovirus associated with prostate cancer and chronic fatigue syndrome. The causal relationship of XMRV infection to human disease and the mechanism of pathogenicity have not been established. During retrovirus replication, integration of the cDNA copy of the viral RNA genome into the host cell chromosome is an essential step and involves coordinated joining of the two ends of the linear viral DNA into staggered sites on target DNA. Correct integration produces proviruses that are flanked by a short direct repeat, which varies from 4 to 6 bp among the retroviruses but is invariant for each particular retrovirus. Uncoordinated joining of the two viral DNA ends into target DNA can cause insertions, deletions, or other genomic alterations at the integration site. To determine the fidelity of XMRV integration, cells infected with XMRV were clonally expanded and DNA sequences at the viral-host DNA junctions were determined and analyzed. We found that a majority of the provirus ends were correctly processed and flanked by a 4-bp direct repeat of host DNA. A weak consensus sequence was also detected at the XMRV integration sites. We conclude that integration of XMRV DNA involves a coordinated joining of two viral DNA ends that are spaced 4 bp apart on the target DNA and proceeds with high fidelity.
  8. jspotila

    jspotila Senior Member

    I just want to say AWESOME! I can't wait to hear what he has to say!
  9. Rrrr

    Rrrr Senior Member

    holy mouse turds, these are GREAT questions. but let's stop there!!!

    again, if i'm not bedridden that day, and i manage to make it in, maybe i'll ask a few of these questions and then ask him if i can email him the rest as follow up questions. i have no idea if he is thinking we'll just meet for 5-10 minutes. but i guess the thing to do is develop a relationship, or at least let him see my face, and then once that is established, maybe he'll be open to me emailing follow up questions.

    also, i see that another forum member emailed him in the past. and coffin was very responsive! so if i can't get to all these questions, which i can't!!, then we all, all of us, can slowly email him the questions we listed here.

    i love this forum. thank you all for being so freaking smart!

  10. Forebearance

    Forebearance Senior Member

    Great Plains, US
    More power to you, Rrrr! I hope you feel well that day and it goes great! He does seem like a nice chap.

    If I had seen this thread sooner, I would have said I would ask him where does he think XMRV might hide out in the body in large numbers? It doesn't seem to like the blood very much. So is it hiding out in some organ or other body fluid?

    And I'd ask him how an XMRV infection might affect the way the immune system functions. I really wonder if or how it might "turn on" those HLA-DR haplotypes that make some people more susceptible to certain biological toxins.

    But I hope you ask him the questions that YOU really want to know the answers to. My questions are not important. You don't have to e-mail them to him.

    Good luck!
  11. Rrrr

    Rrrr Senior Member

    hi forebearance,

    those are great questions!!!!!!!! and ones i would love to ask.

    if i don't get to all these questions, as mentioned, we can all email him, one at a time, all the questions.

  12. julius

    julius Watchoo lookin' at?


    I think your a girl, right. If I were a girl I would ask him if he's married.:D
  13. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    I would ask him:
    -- What he thinks might be the most likely reservoir for XMRV?
    -- Since he said that XMRV was slow replicating, how might that effect the way the virus acts in the body and the coarse of disease?
    -- Besides simply altering the immune system, is there a way XMRV might interact with other viruses (such as EBV, HHV-6, CMV) to cause disease? Like, could XMRV actually alter those viruses in some way?

    Holy moly, what an opportunity. I'd love to sit down and chat with a knowledgeable retrovirologist. What I like about Dr Coffin is that I don't think he's on any "side" in this except for the side of discovering scientific truth.
  14. CBS

    CBS Senior Member


    First, congratulations on creating a fantastic opportunity. I hope that I'm not reading too much into this but I take his willingness to sit down and talk with a CFS patient by itself to be a good sign.

    I think I'd want to ask Dr. Coffin who he thinks is doing quality work on XMRV and which labs or techniques/methods deserve serious attention as new studies are published (Emory, Columbia, WPI, Univ of Utah - my favorite, etc.). As we all know, not all labs or techniques are created equally.

    Good luck (he says with more than a hint of jealousy:ashamed:),

  15. oerganix

    oerganix Senior Member

    First I would like to repeat one of Rebecca's questions: -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?

    Then I would like to suggest that in addition to asking questions, this is a wonderful opportunity for you to educate HIM about ME/CFS, as he has said he doesn't know much about it. Neither did Dr Mikovits before she was engaged by WPI.

    So, I would hope that you would go to your meeting with him prepared, possibly with something printed out, to educate him as much as possible about this illness. If not something printed out, maybe a list on online links where other knowledgable docs describe CFS, like on youtube. Of course, you would need to be sensitive to whether he wanted to know more about CFS, or not. You wouldn't want to be too 'pushy' about it, but he seems like an intellectually curious guy and has certainly heard some of he buzz about XMRVs association with CFS, so he might welcome a mini-seminar from you.

    This is exactly the situation where it would be so nice to have a national advocacy organization we could refer someone like him to, to educate himself at his own pace if he wanted to. But, please be sure not to steer him toward CAA, as they don't do a proper job of educating docs about this illness.

    Maybe just a printed out copy of the Canadian Consensus definition would be a place to start.

    Good luck and thanks so much for sharing this with us!
  16. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Question: Do you think that it is possible to pass on XMRV with the following types of contact:

    1. Someone being in the same room with an XMRV patient when the patient coughs or sneezes in a way that sprays droplets into the air.

    2. Transfer of sweat from the infected person to the lips of another person. For example, someone kissing the forehead of an infected person.

    3. Transfer from touching objects that an infected person hands to you, assuming the possibility that the infected person might have touched his saliva or mucus at some time before handing them to you.

    4. Delayed transfer via objects mailed as correspondence or gifts to others that the infected person handled.
  17. lululowry

    lululowry Senior Member

    Athens, Georgia
    He is going to be speaking at the 1st International Workshop on XMRV: Pathogenesis, Clinical and Public Health Implications in September 7-8 at the National Institutes of Health in Bethesda, Maryland, USA. A CFS speaker, as yet to be named, is on the line-up, as well as someone for prostate cancer. Obviously XMRV presents major public health issues. How quickly might we expect cost-effective testing? Information on how it is spread? And any news on how it might be treated?
  18. spindrift

    spindrift Plays With Voodoo Dollies

    Wow Rrrrrrrrrrrrr you go girl!!!! Thanks for making that happen and letting us suggest questions.

    I would like to say I am very interested in possible ways of transmission. But that has been listed
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    Is that two XMRV conferences this fall?

    And didn't someone mention a debate?

    Boy, at least we have interest, huh?

    If you give Coffin information, do it in the form of recent studies, such as Light study and others in last few years. That's his language.

  20. Jerry S

    Jerry S Senior Member

    Excellent suggestion! Rrrr, the overview version of the Canadian Consensus document can be found at the signature link below. It is in PDF format and can be printed out.

    It would be good to send Dr. Coffin a follow-up professionally printed copy of the Canadian overview, but the "order" link at the National ME/FM Action Network now just leads back to the home page.

    I wish printed copies of the overview were readily available.

    Good luck!!

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