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XMRV study at Mass General Hospital in Boston

Discussion in 'Active Clinical Studies' started by andreamarie, Mar 25, 2010.

  1. Rrrr

    Rrrr Senior Member

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    i talked to dr felsenstein's assistant, tori, and she said that felsenstein has been working with cfs for over a decade.

    i had my doctor's office "petition" for an appt for me with dr felsenstein. now dr felsenstein has to decide if i'm in or not (to being her patient, not to the xmrv study).

    will keep you posted.
     
  2. Resting

    Resting Senior Member

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    Hello, I am new to PR. site
    I'm originally from NE and am pleased to see that there are some doctors accepting this illness as "real" and pursuing this study even if it is to investigate other diseases as well. Yeah, for NE!! I tried to get help when I lived up there and found only scoffers. So I moved to a different state and finally got diagnosed. Glad to know that maybe I could move back there one day and have doctors available to help with this dreadful disease. Glad for my fellow NEers!! Thanks for this post!
     
  3. Rrrr

    Rrrr Senior Member

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    i just got a call from dr felsenstein's office and i have an appt in july! i hope that i can get in her xmrv study, but likely will be too late by then. at least i will have an infectious disease doctor on hand, in case i do go the antiretroviral route.

    if anyone sees this doctor before july, please report here what she is like!

    eager to hear!

    rrrr
     
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    I called the office last Friday and spoke with Tory and she is waiting for Dr Fenselstien to give her a day to schedule me for a visit. Hopefully I can get in on the XMRV study, or perhaps something else in the future!!
     
  5. Rrrr

    Rrrr Senior Member

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    my doctor's office called dr felsenstein's office today and was told the xmrv study is not only closed but completed! hmmmm...
     
  6. I have an appointment with her in June and was referred by another doctor within the MGH....system....If this study is closed and completed...where what and why?
     
  7. Rrrr

    Rrrr Senior Member

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    maybe she will do another xmrv study? i want to try to convince her to do a clincal trial of peptide T, a nontoxic med that was found helpful in the past and that judy mikovits has talked about. there is a whole thread on peptide t on this forum.

    rrrr
     
  8. firefly

    firefly

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    I'm now on her waiting list as well. She's reviewing my records. Hoping to get in sometime this summer.
     
  9. Rrrr

    Rrrr Senior Member

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    great. keep us posted!
     
  10. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    got diagnosed in N.E. in 1986, there were 2 drs in Worcester area, dr, Gantz and Dr. Komaroff. Was'nt that bad back then.
     
  11. Rrrr

    Rrrr Senior Member

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    i set up a SECOND appt with a SECOND infectious disease doctor, dr paul sax at Brigham and Women's hospital in Boston for August 19. i suggest others consider doing the same. he works with HIV, so that is good. and he knows CFS, tho i'm not sure how current his knowledge is. my CFS pal "J" saw him many yrs ago and he was sympathetic. (thanks, "J", for yr help!)

    i did this because i worry that dr felsenstein at Mass General Hospital could not find xmrv in her xmrv study and i'm concerned that now she may not believe it exists and may not treat me for it with antiretrovirals. so this 2nd appt with a 2nd infectious disease doctor is a precautionary move on my part. i may cancel it if i find felsenstein will work with me on stem cells and antiretrovirals. but if she does not, i'll see if sax will. this is his website

    http://physiciandirectory.brighaman...last_name=Sax&first_name=Paul&pict_id=0004294

    rrrr
     
  12. Julia Rachel

    Julia Rachel

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    California
    Unfortuneately, I think it may be this way for some of the studies ongoing, I.E: Mass General, Stanford, etc.....Although, I know Stanford did accept some patients outside of Montoya's in their XMRV study. http://vlgonvalcyte.wordpress.com/
     

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