XMRV study at Mass General Hospital in Boston

[andreamarie]

Massachusetts General Hospital in Boston, MA is doing an XMRV study. I found out about it through a doctor I saw last wk and had my blood drawn today. I was told they are looking for people. I do not know exact criteria but they didn't ask for a direct referral from doctor. I told them I had CFS.

I was told I'd get the results in a few months but it WOULD NOT go into my hospital record. A staff member drew my blood and a fellow then asked me questions about symptoms. He did make it clear that because a study was being done it did not mean XMRV was the cause of CFS. He was very pleasant and professional.

The doctor in charge is Dr. Donna Felsenstein but the person running the study is Katie Mooney. The phone no is 617 724 0075

 

[serenity]

great news! thanks for sharing this

 

[ukxmrv]

That's great Andreamarie,

Did they say if what methods they would be using to do the test?
Glad to hear that you will get the results.

 

[andreamarie]

I didn't ask. but this is a world class hospital. they also said they'd be looking at other diseases, RA, etc.

 

[Hope123]

Yeah, Mass Gen is associated with Harvard. Ted Kennedy went here initially for his brain tumor. Is Komaroff heading the study? He's been involved in CFS research for decades now.

 

[andreamarie]

No, Komaroff is not heading study. He's not at Mass Gen. Dr. Donna Felsenstein, head of i.d. at Mass General is heading study.

 

[FernRhizome]

This is interesting! Does anyone know the backgrounds on Donna Felsenstein and Katie Mooney? ~Fern

 

[andreamarie]

Dr. Felsenstein has been seeing CFS patients for at least fifteen yrs. I saw her twice and then went to Dr. Katherine MacGowan at the Faulkner, because Dr. MacGowan was my first choice and her practice was closed when I first wanted to see her. I'm guessing Katie Mooney is an administrative person who is coordinating the study. She's the one who set up my appt. She told me that they were doing blood draws on Tues. and Thurs. and I'd see Dr. Lee, who is a fellow in i.d. at MGH. If you want to be in this study, I wouldn't wait. They are definitely looking for people at this point. The strange thind is that Dr. Pachas, who I saw last week, knew about it but couldn't find it online and said he'd mail me the info when he found it. I called the former president at Mass Cfids and he told me about the study. Once the study is "out there" I think it will fill up quickly.

I was encouraged to see MGH do this study. In the past, Tufts was "THE" i.d. hospital. Initially, they were very interested in CFS, but seem to have drifted away. Dr. MacGowan, who trained at Tufts, has burnt out re CFS. I also saw Dr. Gorbach, a world famous i.d. doc at Tufts. He was doing the old party line. He told me he used to see CFS patients but stopped because they were so needy in many ways. HOWEVER, I guess he thought I was different. He seemed very concerned about me "expressing my sexuality" and not denying that part of my life. I was rather stunned and had a hard time shutting him up. I was about sixty two (don't look it). He did say if I couldn't find anyone he'd be happy to see me. I attributed this all to the fact that I was having a "very good hair day."

It was great to see a young doc, who is clearly brilliant (fellowships at MGH go to the best and brightest) clearly interested in CFS. After he asked me the questions for the study, I told him some other symptoms that I thought might be related and he was very interested. He trained in San Fransico and said he really loved the change of seasons here. It's not uncommon for fellows to be offered posts at the hospital they do their fellowships at. How nice if he'd stay.

 

[FernRhizome]

Hi everyone: I just tried to get into this Boston study, was all set with an appt., had faxed records etc. and then they decided the study was going to be closed to anyone who was not already a patient of Dr. Felsenstein's. I was SO disappointed! But I do understand. Even though I have a CFDS diagnoses from top docs in the field and have been seen by other specialties at Mass General. They need to make sure they have a "cohort" determined by a clinical doctor from her own group of patients. So just posting this info for other folks. It's frustrating! Kind of the luck of the draw right now as to when and where each study will happen & hard to get in if not already on the log roll with that particular doctor. ~Fern

 

[leaves]

Yeah me too bummer

 

[FernRhizome]

Oh Leaves! Sorry! I know...I am really really sad.....it is so hard to wait. I may make a new patient appt. with that doctor just in case the study is expanded in the future. But a new patient appt. is months out. I guess we have to be careful when posting to the forum as we can get excited without knowing all the details. Sometimes doctor's offices & research office staff don't have all the info..~Fern

 

[leaves]

Yes. However I'm very happy that the study is done. Good idea to take her as a dr, I couldn't find a cfs literate doc in Boston area and have Dan doc now. Would be good to have a cfs doc nearby.

 

[andreamarie]

Sorry if it didn't work out for anyone. I VERY CAREFULLY wrote my exact experience. EXACT. I am upset because this means I might be bumped from study at review. I used to recruit patients for studies and was surprised that no records, etc. were asked for. I only saw this doc twice fourteen yrs ago and her name wasn't mentioned by coordinator.

 

[leaves]

Hey Andreamarie
I hope you will get in the study and that they won't back out. Keeping my fingers crossed for you

 

[Rrrr]

i, too, just called and they said they are only including dr felsenstein's current patients in the study. and she is not taking any more patients. -- rrrr

 

[Rrrr]

update: a friend just called (at the same time i did) and she got a first time appt with the doc (and thus, i assume, will be allowed in the study). why they took her and not me, i'm not sure. i assume it is because i asked to join the study and she did not. she just asked to become a new cfs patient of dr felsenstein.

-- rrrr

 

[1972]

Dr. Donna Felsenstein, (MGH Inf. Dis.), is a specialist in Sexually Trans. Disease.

http://cme.hms.harvard.edu/cmeups/pdf/00302775.pdf
This link lists Dr. Felsenstein as a speaker on June 10, 2010 at 1:30-2:15 in the
brochure for: "The 50th Annual Internal Medicine Comprehensive Review and Update"
The topic of her lecture is "Sexually Transmitted Diseases".
The MGH profile for this Dr. lists very few research publications -
this seems to be her area of expertise.
XMRV in this context would seem to be a behavioral issue and of limited research importance.

Massachusetts General Hospital in Boston, MA is doing an XMRV study. I found out about it through a doctor I saw last wk and had my blood drawn today. I was told they are looking for people. I do not know exact criteria but they didn't ask for a direct referral from doctor. I told them I had CFS.

I was told I'd get the results in a few months but it WOULD NOT go into my hospital record. A staff member drew my blood and a fellow then asked me questions about symptoms. He did make it clear that because a study was being done it did not mean XMRV was the cause of CFS. He was very pleasant and professional.

The doctor in charge is Dr. Donna Felsenstein but the person running the study is Katie Mooney. The phone no is 617 724 0075

 

[Hope123]

http://cme.hms.harvard.edu/cmeups/pdf/00302775.pdf
This link lists Dr. Felsenstein as a speaker on June 10, 2010 at 1:30-2:15 in the
brochure for: "The 50th Annual Internal Medicine Comprehensive Review and Update"
The topic of her lecture is "Sexually Transmitted Diseases".
The MGH profile for this Dr. lists very few research publications -
this seems to be her area of expertise.
XMRV in this context would seem to be a behavioral issue and of limited research importance.

1972, welcome to the forum.

I'm not sure what you are trying to say with your post? But the brochure you listed is continuing medical education for general internists. Having had friends who put together CME, she probably was asked to speak about STDs as an infectious disease doc and not as an infectious disease doc whose specialty area within infectious disease is sexually transmitted diseases. A quick Pubmed search shows she has published on herpes viruses and HTLV also. In any case, even if STDs were her specialty, CFS research has unfortunately had a LACK of interest from ID docs until recently so I am glad when they are interested in our illness.

 

[sunnyslumber]

I just hope she uses the Canadian Definition, for consistency, and follows a stringent protocol for finding the virus, most especially after some consolation with the authors of the Science Paper. The chronically infected macaques already demonstrated it disappears from blood at the chronic stage and a very sensitive

 

[1972]

PubMed search shows two coauthored publications:
http://www.ncbi.nlm.nih.gov/pubmed/16117745
("...Diagnostic Strategies For Vaginitis.")
http://content.nejm.org/cgi/content/extract/353/25/2697
("...Serologic Test for Syphilis...")

1972, welcome to the forum.

I'm not sure what you are trying to say with your post? But the brochure you listed is continuing medical education for general internists. Having had friends who put together CME, she probably was asked to speak about STDs as an infectious disease doc and not as an infectious disease doc whose specialty area within infectious disease is sexually transmitted diseases. A quick Pubmed search shows she has published on herpes viruses and HTLV also. In any case, even if STDs were her specialty, CFS research has unfortunately had a LACK of interest from ID docs until recently so I am glad when they are interested in our illness.