• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Comprehensive list of XMRV researchers world-wide?

FernRhizome

Senior Member
Messages
412
Does anyone know if there is a list of XMRV researchers for the U.S. or world-wide? I thought someone on the forum was going to compile the list of researcher names, the labs, and their XMRV research focus. I'd love to know if that ever happened. If not, is there anyone "in the know" enough to put it together? It could be a valuable resource to add to the library for those of us who might at one point or another, want to contact a researcher regarding their specific focus or just so we know where they all are. ~Fern
 

Rrrr

Senior Member
Messages
1,591
WPI
Cooperative Diagnostics
Abbott labs
RAPID labs (Candace Pert's Peptide T work)
CDC
Nancy Klimas and her clinic
Coffin at Tufts
Huber at Tufts
The Rusetti's (husband and wife) at the National Cancer Insitute
Singh (sp?)
Dr Felsenstein at Mass General Hospital
Cleveland Clinic's Silverman

who else? must be lots of others in many countries by now.
 
R

Robin

Guest
WPI
Cooperative Diagnostics
Abbott labs
RAPID labs (Candace Pert's Peptide T work)
CDC
Nancy Klimas and her clinic
Coffin at Tufts
Huber at Tufts
The Rusetti's (husband and wife) at the National Cancer Insitute
Singh (sp?)
Dr Felsenstein at Mass General Hospital
Cleveland Clinic's Silverman

who else? must be lots of others in many countries by now.

Specific to XMRV/CFS or just XMRV?

Nicole Fischer was the lead on the XMRV German respiratory tract study, she used to work under Joe de Risi who is one of the discoverers. Here's her lab: http://www.uke.de/institute/infektionsmedizin/index_ENG_34895.php
 

paddygirl

Senior Member
Messages
163
XMRV Docs

I think and hope that as the research broadens, more doctors might come on board with their various specialities.

Today I am driving to hear a Doctor Weir speak in Galway Ireland. Yesterday he spoke in Dublin.

He has a special interest in ME and has a clinic in Harley St London and in Belfast.

His speciality is Infectious Diseases. So he is well placed for ME/CFS, if XMRV is the main culprit.

Although he is not a researcher as such, my hope is that doctors like him will be well placed when treatments become available.

I was at the London Conference last week and was struck at how few dedicated people we really have. And how many of them are now in their 50's and 60's. Someone did comment that they need more young doctors coming up. More patients than could ever be cared for by the doctors involved.

Back to work next week as sick leave is up and I don't know how I'll do it. Very weak all the time and half asleep with painkillers, but hanging in there.
 

Cort

Phoenix Rising Founder
Here's a list I made up on my website http://www.aboutmecfs.org/Rsrch/XMRVStudies.aspx


United States and Canada

  • The CFIDS Association of America reports that the Health and Human Services Working Working Group on XMRV will have oversight over the federal effort on XMRV. Dr. Suzanne Vernon, the CFIDS Association's Scientific Director will be part of the group along with representatives from the NIH, CDC and FDA. It appears to be a large effort indeed. With regards to ME/CFS the group is taking a three stage approach:
  • (1) First they will attempt to standardize and validate tests for XMRV. Then they'll test 1,200 healthy donors and 100 patients provided by the Whittemore Peterson Institute.
  • (2) Secondly they'll assess the prevalence of XMRV in the general populations, the blood supply and in other groups of people with CFS
  • (3) Lastly they'll dig into to how XMRV is transmitted, what effects it may have, and how it may affect other groups

  • Dr. Bell will be assessing patients from his pediatric Lyndonville cohort from the early 1980's using Dr. Ruscetti 's laboratory at the National Cancer Institute.
  • The CDC's HIV division study will reportedly assess WPI samples, Wichita/Georgia samples and hopefully samples from other CFS groups. As of Oct 29th Dr. Miller reported that 100 'CFS' samples had been tested.
  • CFIDS Association of America will collaborate with Glaxo-Smith Kline to test for XMRV in a cohort similar to that found in the Science study. The CAA will provide samples from its BioBank and GSK will do the testing. Importantly they will include people who have tested positive for XMRV by VIP dX/WPI in the study.
  • Cooperative Diagnostics Lab in South Carolina is reportedly using cutting edge technology to assess XMRV. They are believed to be partnering with the HIV division in the CDC.
  • Cornell University in cooperation with the Columbia University Center for Infection and Immunity and the Whittemore-Peterson Institute are embarking on a study assessing XMRV status in relation to functionality
  • Hemispherx is reported testing Ampligen responsive patients at WPI
  • Dr. Brigette Huber of Tufts University
  • Dr. Joliceur at L'Institute de recherche attached to the University of Montreal in Montreal, is reportedly doing a 50 patient study - this study did not find XMRV
  • Dr. Nancy Klimas - ME/CFS patients in her ongoing "Good Day: Bad Day" study - Miami, Florida
  • Dr. Nancy Klimas - Gulf War Syndrome patients in another ongoing study - Miami, Florida
  • Panorama Research Institute in Sunnyvale, Ca. is developing their own XMRV test for CFS. (They were advertising on Craigslist for patients)
  • Stanford University involving Dr. Montoya's EBV positive patients
  • Dr. Illa Singh, Dr. Light and Dr. Bateman and ARUP are working on a second larger XMRV study after the first study (apparently) had positive results. Read about it here.

UK and Europe

  • a UK study involving Dr. Kerr and including samples from Dr. Enlander in the US - uses both Fukuda and Canadian criteria, assessing gene expression in NK cells and XMRV status - Target Date - Summer 2010 ; this study was canceled after the first study did not find any positives.
  • Invest in ME announced in March that they were pairing with the WPI to study XMRV in UK ME/CFS patients. Check out a discussion about it here
  • another UK study from the University College London College London - this study did not find any positive XMRV samples
  • Imperial College Study involving Dr. Cleare, Dr. Wessely and Dr. McClure- this study did not find XMRV
  • a Swedish study - Target Date - Spring/Summer 2010 - this study with Dr. Jonas Blomberg is reportedly using new cutting edge technology. It will look at approximately 140 CFS patients with FM and IBS and healthy controls - this study was reportedly postponed after the lead researcher met with a tragic accident
  • Robert Koch Institute - Norbert Bannert is redoing his (negative) prostate XMRV study using a new antibody test and appears to be testing ME/CFS patients as well
  • Kiel University in Germany - Dr. Mikovits reported this study
  • Ellie Barnes in Oxford, UK - Dr. Mikovits reported
  • Institute Ferran in Spain - 100 patients with demonstrated abnormalities on repeat exercise tests/100 controls Study begins - January 2010
  • University of Pisa in Italy - will do an XMRV study on chronic fatigue syndrome and fibromyalgia. They started advertising for positions to work on the study in April, 2010.
  • Kuppeveld in the Netherlands - this study did not find XMRV

Further Afield

Dr. Lloyd in Australia is reportedly testing his Dubbo study patients.
Thanks to the participants of the Phoenix Rising forums for digging many of these up. If you have more news on XMRV studies please email me at phoenixcfs@gmail.com. Thanks!
 

FernRhizome

Senior Member
Messages
412
Thanks everyone! And Cort that is a FABULOUS list! I assume you are keeping it updated as anything new comes along? That was just what I wanted. Thanks, thanks, thanks! ~Fern
 

JT1024

Senior Member
Messages
582
Location
Massachusetts
John Hackett, Jr of Abbott Labs needs to be added to the list. He presented February 19 at CROI 2010 in San Francisco. He represented Abbott and indicated they were extremely close to having a test for XMRV. Abbott makes an analyzer used to screen blood supplies for HIV, HepB, and HepC. Since they already have the expertise for these viruses, adding XMRV wouldn't be difficult.

Look at the names involved in the study: XMRV: Examination of Viral Kinetics, Tissue Tropism, and Serological Markers of Infection

X Qiu1, P Swanson1, K-C Luk1, J Das Gupta2, N Onlamoon3, R Silverman2, F Villinger3, S Devare1, G Schochetman1, and John Hackett, Jr*1
1Abbott Diagnostics, Abbott Park, IL, US; 2Cleveland Clin, OH, US; and 3Yerkes Natl Primate Res Ctr, Emory Univ, Atlanta, GA, US

Also, John Petros, MD needs to be added:

John A. Petros, MD, associate professor of urology, Emory School of Medicine and Veterans Administration Hospital - An article published in the April 2010 issue of Urology is a step in this direction as researchers from Emory University report the successful development of an experimental clinical test for XMRV. Petros and co-investigators adapted technology developed in the HIV arena (neutralizing antibody assay) and have developed a serum test that can identify patients who have previously been infected with the virus. Two independent labs and independent technologies (PCR and FISH) confirmed the test.
 

Rita

Senior Member
Messages
235
Study of Dr Ferran in Barcelona, Spain, was posponed.(lack of fund or lack of patients CCC?)

Now we are wainting for the results of a little study with only 12 patients of Dr. Bonaventura Clotet, a retrovirologist of Germans Tries i Pujol Hospital , Badalona, (near Barcelona) Spain.He wants to study the immunological abnormalities of the CFSs , despite the results are positives or negatives.We patients have collected money for this study.
 

lululowry

Senior Member
Messages
103
Location
Athens, Georgia
More from Emory

To add to Petros:

Ross J. Molinaro, PhD
Clinical Chemistry
Molecular Medicine
http://pathology.emory.edu/AdminFacultyMember.cfm?Name_seq=1466

Hinh Ly, PhD
Cancer Biology
Microbial Pathogenesis
- Possible roles of the novel retrovirus XMRV and host factor(s) in human prostate cancer development
A novel gamma-retrovirus (XMRV) has recently been reported in up to 40% of familial prostate cancer patients. We are interested in examining the roles of XMRV infection in prostate cancer development and of its known receptor (Xpr1) in mediating viral infection as well as its other yet unknown function(s) in normal and malignant cells.
Published paper: Bhosle, S., Suppiah, S., Molinaro, R., Liang, Y., Arnold, R., Diehl, W., Makarova, M., Blackwell, J., Petros, J., Liotta, D., Hunter, E., and Ly, H., 2010. Evaluation of cellular determinants required for in vitro XMRV entry of human prostate cancer and non-cancerous cell lines. J Virol. (in press)
http://pathology.emory.edu/AdminFacultyMember.cfm?Name_seq=1094

Raymond Schinazi
Profile: http://www.emory.edu/PROVOST/greatscholars_old/RaymondSchinazi.htm
http://www.pediatrics.emory.edu/divisions/biochem/

Jerry Blackwell Vaccine Research XMRV
http://medicine.emory.edu/divisions/id/research/ID Basic Sciences.cfm
http://www.vaccines.emory.edu/scientists/blackwell.shtml
 

Cort

Phoenix Rising Founder
Thanks everyone! And Cort that is a FABULOUS list! I assume you are keeping it updated as anything new comes along? That was just what I wanted. Thanks, thanks, thanks! ~Fern

Thanks Fern - actually after I posted it I realized it was quite out of date and I updated it: here's a link to the updated one http://www.aboutmecfs.org/Rsrch/XMRVStudies.aspx

I just added those two - thanks.
 

Hope123

Senior Member
Messages
1,266
Great list.

Also, Prachi Sharma, part of the Emory team, but she was the pathologist who looked at tissue samples for XMRV.

And Olav Mella's team at University of Uppsala in Sweden - did the rituximab studies in CFS; I don't know if they're doing XMRV studies but they are definitely aware of them and interested in pathogens.
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
Hi, Its not been confirmed (its awaiting ethics committee approval I think) Professor Warren Tate, Otago University, NZ. I can't find the blurb at the moment - it was on the Uni website.
Jill
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
Here it is Cort:
As I say I'm not sure how far along the funding pipeline it has got - will keep you informed. Samples will be collected and banked - I think those samples are going to be coming from Dr Ros Vallings practice here in Auckland - should it all get funded that is.



University of Otago Division of Health Sciences.
Indicative projects for 2010:

XMRV as a potential cause of chronic fatigue syndrome

Supervisor: Professor Warren Tate

"Currently there is no diagnostic test for Chronic Fatigue Syndrome (CFS) although millions world wide are affected with the syndrome. A very recent Science paper (9.10.09) has linked CFS with a rodent retrovirus XMRV (rather like HIV-1) that can as well cause aggressive prostate cancer. About 70% of the affected group had evidence of the virus compared with only 4% of the control population. My lab has done developmental work on a rogue RNAse L cleavage fragment for a biomarker since it is claimed to be specific for CFS and indirectly to deplete affected cells of 50% of their ATP. We would like to examine the virus and its translational mechanisms as a potential drug target and establish the RNAse L fragment as a biomarker."