A Mass General XMRV Study: Dr. Felsenstein

[Rrrr]

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

 

[glenp]

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

 

[serenity]

yes good news! keep those studies coming

 

[dsdmom]

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

 

[firefly]

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.

 

[*GG*]

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

 

[Cort]

Thanks for the news!

 

[Rrrr]

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

 

[andreamarie]

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.

 

[andreamarie]

I should have said "when I showed another doc the forms"

 

[Rrrr]

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).

 

[muffin]

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.

 

[andreamarie]

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.

 

[andreamarie]

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.)

 

[Rrrr]

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.

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.

 

[dsdmom]

follow up on Dr. Sax at Brigham and Women's Hospital. I called his office and they told me he (they) do not treat xmrv. that i can see him for my CFS if i get my doctor to call his office first.

i won't do this now. i'll see dr. felsenstein next week first.

also, i talked to my Primary Care Physician, and he now says that he would consider prescribing antiretrovirals for me IF he has someone overseeing his use of them, i.e. an infectious disease doctor who knows about using them for xmrv. and judy mikovits said that if i find i am xmrv positive (i think she means if any of us find out we are positive) she will put my/our doctor(s) in touch with an infectious disease doctor who is currently treating xmrv+ patients with antiretrovirals, so that doctor can guide our primary care physicians. but i guess she is not giving out the name of that doc unless we are xmrv+.

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

 

[Rrrr]

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

 

[dsdmom]

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.

 

[andreamarie]

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.

 

[Julia Rachel]

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.