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Interviewing Dr. Coffin

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

  1. Rrrr

    Rrrr Senior Member

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    thanks! i forgot to mention that i schleped out yesterday to buy him flowers to bring him, to thank him for all his work on our behalf. and of course now i have them on my own kitchen table.

    YES, how do we get a clinical trial going? i am ignorant of this world. do we just need one willing doctor? how does this work? anyone know?
     
  2. flybro

    flybro Senior Member

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    pluto
    Thanq thanq thanq
     
  3. Navid

    Navid Senior Member

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    maybe a separate thread should be started with this question...using dr. coffins quotes as a point of reference as to why this is needed?!?!

    i'm thinking ppl like kim, cbs, dr deck-off jones, kurt, jspotila, dr donnica (i'm sure many, many others, but these are who pop into my head right now) might have ideas...prob parvo too: but she lives in canada where the medical system is completely different.

    i'll be a guinea pig : )

    thanks
     
  4. Gerwyn

    Gerwyn Guest

    we need ethics commitee approval somewhere
     
  5. Gerwyn

    Gerwyn Guest

    does anyone have dr coffins e mail address
     
  6. gracenote

    gracenote All shall be well . . .

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    Thanks so much Rrrr.

    I found myself holding my breath getting to the answer to this question:
    I will have to be patient for a response as there was no answer to be had this time.

    Enjoy your flowers, Rrrr. You deserve them.

    [​IMG]
     
  7. Rrrr

    Rrrr Senior Member

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  8. Rrrr

    Rrrr Senior Member

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    gracenote,
    I know. i really wanted to ask that and other questions, but what happened was that he'd answer a question and slide into another area that we had a question for, so i slid with him in whatever direction he went.
     
  9. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
  10. Rrrr

    Rrrr Senior Member

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    i think i fixed the first website now so that it should work. also, just google coffin and tufts, and it comes up as the first hit.
     
  11. VillageLife

    VillageLife Senior Member

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    Weldone. Congratulations on a stunning interview. You should be so proud, you have made history. Thankyou.
     
  12. Hope123

    Hope123 Senior Member

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    Thanks for interviewing Dr. Coffin, Rrr! It was so gracious of him to try to answer our questions.

    In terms of a trial, if someone starts a separate thread so it doesn't muck up this thread, I will try to comment on it when I get the energy. I don't know the exact methodology of it but one of my docs and I were talking a bit about this recently. It would likely have to be an open-label trial, involve more than one clinician (given that XMRV+'s are spread out), and would need ethical approval through a board as Gerwyn mentioned. Also, in the USA, it might need to go through the FDA Investigational New Drug (IND) protocol although as I mentioned, this needs to be check out.
     
  13. Gerwyn

    Gerwyn Guest

  14. citybug

    citybug Senior Member

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    Dr. Mikovits talked about waiting for trial approval for peptide T (I think) on the prohealth video. Right now they would have to be on the scattered clusters of people who have tested positive, or collaboration with WPI who can do the multiple tests--though in a few months could be another test!

    Other people have also said we confirm it by treating it. That's what's missing in the CFSAC meeting and govt XMRV working groups. None of them are talking about treatment trials for CFS yet. All our letters to Sibellius etc need to say we need funding for treatment trials.
     
  15. VillageLife

    VillageLife Senior Member

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    Yes I think they are just making sure the test is 100% ready first, then I'm see they will follow with the next steps.
     
  16. citybug

    citybug Senior Member

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    I'm so impressed you did it! Here are my favorite parts, and my future questions at the end. I was holding off on giving you more questions!

    Rrrr NOTE: Too sick to go in person, I spoke to Dr. Coffin via phone on May 14. 2010, for half an hour.

    he's open to email questions!

    With Brigitte Huber (who is currently doing a study on genetics and Mono and CFS), they are collaborating on xmrv in human virus. ** Xmrv is so close to the viruses that they find in mice .... They are working on nailing this down; that it really is in human dna that they are seeing XMRV.

    ** In Fredrick (the NCI), they are developing extremely sensitive assays in plasma and in PBMCs (white blood cells). They are not looking elsewhere in the body at the moment. Yes, they want to look in lymph nodes and guts [the two places the interviewer asked about, offering her own body for biopsying], but they'll do that later. Not quite so simple to do this in terms of the paper work.

    A. ** How do you know if XMRV is the cause of CFS? If you treat the infection, and if you thus address the symptoms, then you know. Though others in his field may not agree the time is right, he would like to see a controlled clinical trial with antiretrovirals now: if they work to treat the symptoms, then we are on to something. When I asked how do we get a doctor on board without a paper confirming/replicating the link between XMRV and CFS, he said that this is the problem, can you get a controlled clinical trial before that association is confirmed? He said that is hard, but that he would like to see such a trial now, without more waiting.

    A. ** He thinks they have a good test now [interviewer got the impression that he means they just got it recently]. It will be a good way to assess the risk to the [nation's] blood supply. The test will be available very quickly. Abbott laboratories is working on this. They were part of the HIV tests at the start. And this will become part of the screening of the blood supply. The best test will be an antibody test, as that is easier. [I was not sure if he meant that this Abbott test is an antibody test or not?]

    Q. How exact do you have to be with your PCR primers to pick up a different strain or a different serotype of XMRV.
    A. ** This is an area a lot of people are working on now, at Tufts, at the FDA. What is the genetic diversity of the findings We may have been mislead for one reason or another from the original study. WPI has to do an assay that would not see the mouse dna.

    A. ** He thinks we'll know in a few months if there is a link between xmrv and cfs. The group doing this work is the protein expression lab at NCI. This is not the Ruscettis' doing this work.

    A. ** His hope would be that someone would set up a good controlled trial. Without doing a good placebo controlled trial, we can't move forward. ... We need to lobby for a controlled trial to be set up. It would not be a bad idea to do this, though others in his field would not agree.


    FUTURE QUESTIONS:

    ***What does it take to get a good trial to duplicate Science results which amplifies the low viral count? Does anyone have the money to do it?

    Does he think XMRV is likely to have neurotoxins in the envelope?

    Does the reference to mouse dna mean they need isolate and create a test that reacts only to the part of the XMRV dna that is different from the mulv virus?

    They say that lab mice cannot transmit the virus. Is anyone testing wild mice and ticks?
     
  17. Navid

    Navid Senior Member

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    I started a new thread in the XMRV Testing and Treatments section:

    How to Start a Clinical Trial w/ARV's for XMRV+'s
     
  18. JT1024

    JT1024 Senior Member

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    Will Dr. Coffin's Group at Tufts/NIH get benefit from this?

    Just saw this and wondered ...


    Mass. scientists get $55.5 million in stimulus money

    E-mail|Link|Comments (9)Posted by Gideon Gil May 14, 2010 02:25 PM
    By Stephen Smith, Globe Staff

    Scientists at nine Massachusetts research centers were awarded a total of $55.5 million in federal stimulus grants today to pay for new buildings, labs, and renovations.

    The Massachusetts Institute of Technology received the most, $15 million, to underwrite renovation of a Cambridge building devoted to public health research focusing on neuroscience, aging, cancer, heart disease, and novel drug deliver models. Only two other institutions nationally received that much money.

    The National Institutes of Health announced $1 billion in stimulus grants today. In a statement, Kathleen Sebelius, US secretary of Health and Human Services, said the money "will not only give our world-class scientists the modern facilities they need for impact research, it will also help create and maintain jobs."

    Other top recipients in Massachusetts included Tufts University ($9.5 million), the University of Massachusetts at Amherst ($7.1 million), and Brigham and Women's Hospital ($6.1 million). The remaining recipients include Beth Israel Deaconess Medical Center ($1.8 million), Boston University ($5.9 million), the Forsyth Institute ($4.4 million), Schepens Eye Research Institute ($500,000), and the University of Massachusetts Medical School in Worcester ($5.2 million).
     
  19. jimbob

    jimbob ME/CFS84-XMRV+

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    thanks Rrrr for all the hard work you put in. every little bit of info we can get right now is greatly appreciated.
     
  20. rebecca1995

    rebecca1995 Apple, anyone?

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    Rrrr, thank SO MUCH for doing this! You totally rock!

    I thought this was fascinating:
    I had never heard that before about HIV. Now we just have to hope that XMRV responds the same way!
    [​IMG]
     

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