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A Mass General XMRV Study: Dr. Felsenstein

Discussion in 'XMRV Research and Replication Studies' started by Rrrr, Jun 30, 2010.

  1. Rrrr

    Rrrr Senior Member

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    I talked to Dr. Felsenstein's assistant yesterday who called to confirm my upcoming appt. She said that the doctor's xmrv study is complete and they are shopping it around for publication. Wow. I really know nothing more than this. I think there is another institution on board, maybe I heard MIT somewhere at some time, but I could be making that up..?

    Does anyone know more about any of this?

    Dr. Felsenstein is an Infectious Disease doctor at Massachusetts General Hospital, a very prestigious hospital in New England. I see her for the first time in mid-July.

    Rrrr
     
  2. glenp

    glenp "and this too shall pass"

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    TY for posting this RRR

    I believe we need to hear of all the studies - don't like to hear any of them being kept quiet -- easier to be hidden

    glen
     
  3. serenity

    serenity Senior Member

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    yes good news! keep those studies coming :)
     
  4. dsdmom

    dsdmom Senior Member

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    Is it me or does it seem like this study was completed rather quickly?
     
  5. firefly

    firefly

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    I'm scheduled to see Dr. F in October. Had been scheduled for July, but then got bumped, according to the assistant because they had to redo the whole calendar to give precedence to the many already enrolled patients who now wanted to see their doc for a followup. No idea how this correlates to the XMRV study though.
    Rrrr, looking forward to your report when you do see her.
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I see her at the end of August for the 1st time, hopefully something good comes of it!
     
  7. Cort

    Cort Phoenix Rising Founder

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    Thanks for the news!
     
  8. Rrrr

    Rrrr Senior Member

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    my latest thinking about this felsenstein xmrv study is that it was done rather fast, and thus not likely using the WPI methods.
     
  9. andreamarie

    andreamarie Senior Member

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    I was in the study. When I showed him the forms he said it was farmed out to an independent lab, not done at Mass General. I am waiting to hear from her re my results. My appt for Aug.30 was bumped to Nov 1 and I am really upset about that. Even if i am positive for XMRV, I would not expect her to give me antivirals. I have seen her in the past,found her difficult. Mass General is a very consevative hospital; she would not use antivirals if it wasn't common practice.
     
  10. andreamarie

    andreamarie Senior Member

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    I should have said "when I showed another doc the forms"
     
  11. Rrrr

    Rrrr Senior Member

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    did you know that there is a whole thread on discussing her on this forum? search for felsenstein.

    hmmm. i was worried about just this (that she'd be too conservative to prescribe antiretrovirals).
     
  12. muffin

    muffin Senior Member

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    If this study comes out negative and the methods are poor, etc. then we fight this study as well. We have to fight on all fronts and with everyone. Shame, since we don't have the energy to fight but NOW is the time or it is Defrietas all over again and another 30 years before someone does the heavy research on the Retrovirses. Which is exactly what the CDC is trying to do right now. Kill it all off for another 30 years so that those involved are not incriminated.
     
  13. andreamarie

    andreamarie Senior Member

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    Dr. Felsenstein called me and told me I was negative but that we do not know what this means. She couldn't figure out how I got into the study since I haven't seen her in fourteen yrs. I don't think this study is crucial because I was told by two research docs it was farmed out. It could have been farmed out to WPI. Also, I got no indication that MGH is looking for publication. I have an appt to see her Nov 30. My original appt on Aug 30 was pushed up to Nov 30.
     
  14. andreamarie

    andreamarie Senior Member

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    I wanted to add that she told me she doesn't know what my "negative" means. I was so stunned to hear from her and told her I didn't want to have XMRV (stop throwing things at me.)
     
  15. Rrrr

    Rrrr Senior Member

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    Thanks, Andreamarie, for this info.

    Why was Felsenstein surprised that you were in the study? Did she not approve each study participant ahead of time? Was it old blood that they used, or did you have a blood draw for this study?

    P.S. Judy M said to me via email that she had not heard of a Mass General study. So I doubt Mass General farmed it out to WPI.
     
  16. dsdmom

    dsdmom Senior Member

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    Great to know - thanks so much for sharing, Rrrr!
     
  17. Rrrr

    Rrrr Senior Member

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    i'll bet dr sax WOULD treat us for xmrv if we met him face to face. (he is an HIV doc.)
     
  18. dsdmom

    dsdmom Senior Member

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    My guess about sax is that if xmrv is proved to be causative then sure, he'll treat us. But until then...he's @ BWH which is extremely conservative - like MGH. In fact if you look @ BWH's website they don't even list CFS as a health condition!

    I just would be really surprised if any docs at MGH, BWH, etc will treat with antiretrovirals until there are more studies done.
     
  19. andreamarie

    andreamarie Senior Member

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    Dr.Felsentstein was surprised I was in the study because it was a very small study limited to her current CFS patients. I haven't seen her in fourteen yrs. and told her I was told about the study by an MGH doc I saw, called that day and Katie told me to come in. It was a fresh blood draw. Dr. Felsenstein was confused and intrigued about how this happened and also asked me if I had CFS. I told her the doctors I'd seen (all i.d. big names) who diagnosed me immediately and that I'd only seen her a few times because I was waiting to see another doc who was on leave. They know each other. I told her my labs from her are in the MGH computer and that could have caused the confusion. The truth is I think it was dumb luck.
    She was very nice, low keyed and said she was looking forward to seeing me again.
    Dr. Komaroff was cheif of medicine at Brighham & Women's; the hospital is very aware of CFS. I saw a doc there until he retired for my sleep disorder.
    I've been dealing with big name Boston medicine for forty yrs. for other illnesses. This is a great area for medicine but very conservative.
    Every doc I saw for CFS saw HIV patients; I do not believe this would make any difference in prescribing antivirals, especially if you were negative.
     
  20. Julia Rachel

    Julia Rachel

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    There is an XMRV Study underway at Stanford who has teamed with Top Internatiunal Virus Hunters.

    In a section of the email inviting patients to participate in the study it quotes "Our research team is pleased to announce that we have just begun our study looking for pathogens that may be associated with Chronic Fatigue Syndrome. Among the list of pathogens we are looking for is the xenotropic murine leukemia virus-related virus (XMRV), viruses in the human herpes family, tick-borne bacteria (including the etiologic agent of Lyme Disease), and several others. We are collaborating with a team from Columbia University in New York City who will be doing the testing for these pathogens. The team from Columbia is an internationally recognized microbe hunter and well-established group. We hope that our study will be able to shed some light on the role of chronic infection in Chronic Fatigue Syndrome."

    I believe the study will be more than One Year and be published in less than 2 years beginning date: a few months ago.
     

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