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Ongoing XMRV Studies

 

 

 

 

 
Cort Johnson

Phoenix Rising - Cort Johnson's Column

...Presenting complex chronic fatigue syndrome (ME/CFS) research in a way we can all understand.

 


 

 

 

 

 

 

 

 
 
Cort Johnson publishes the free Phoenix Rising newsletter and runs the website of the same name. An ME/CFS sufferer himself, since 2005 he has used his keen intellect to follow the latest developments in ME/CFS research and treatment and translate the often complicated concepts into language that the layman can understand. An active advocate Cort has been participating vigorously in the Campaign for a Fair Name to get CFS recognized as ME/CFS.

 

 
 

 

 Tuesday, December 22nd, 2009:

 

Ongoing XMRV Studies

 

 

by Cort Johnson

 

 

How excited is the retroviral research community about XMRV? Before the Science paper had even been published retrovirologists had met in San Francisco to start getting their ducks in a row regarding this new discovery. Several weeks after the papers was published 75 retrovirologists met at the Cleveland Clinic to develop their plan of attack. The studies are happening; there are possibly many more than mentioned here. Its pretty clear that we may fairly quickly know more about this virus than any other aspect of ME/CFS (after 20 years of study); this is what happens when the scientific community gets interested in something.  These are what I've found thus far.



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

 

  • 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
  • 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
  • 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
  • Cooperative Diagnostics Lab in South Carolina is reportedly using cutting edge technology to assess XMRV
  • 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. 
  • Dr. Illa Singh and the retroviral lab at the University of Utah at Salt Lake City are developing a test for XMRV. Dr. Bateman is working with her.
  • Dr. Joliceur at L'Institute de recherche attached to the University of Montreal in Montreal, is reportedly doing a 50 patient study.


Europe and the UK

  • a UK study involving Dr. Kerr and including samples from Dr. Enlander in the US  - Target Date - Summer 2010
  • another UK study from the University College London
  • a Swedish study  - Target Date - Spring/Summer 2010 - this study is reportedly using new cutting edge technology
  • Dr. Shepard of the MEA reports four 'very good' research groups are 'very keen' to do followup studies and that money is not a problem


Further Afield

  • A Russian Study involving the Rossiyskogo Cancer Research Center Blokhin Target Date - Winter/Spring 2010/11
  • Dr. Lloyd in Australia hoped to get a study together to test his Dubbo patients but its unclear whether he did
  • There are rumors of a New Zealand study


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 This email address is being protected from spambots. You need JavaScript enabled to view it. .  Thanks!

 

 

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