XMRV CFS Studies

There is a huge urgency regarding this in the retrovirologist community” Dr. Lucinda Bateman

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.

Thus far three negative follow-up studies have occurred but several studies have recently been added including a follow-up study apparently in response to a positive smaller study at the University of Utah. We also have new studies starting from the CFIDS Association of America/Glaxo-Smith Kline, an Invest in ME/UK collaboration and a University of Pisa study.

These are what I’ve found as of October, 2010. Positive Studys are outlined in this color ; negative studies in this color. Still to be completed studies are not colored. Check out a look at What’s Next for XMRV?

United States and Canada

Dr. Alter at the NIH independently validated the WPI findings of a retroviral connection in ME/CFS.

• Dr. Alter is reportedly looking for antibodies, attempting to culture the virus and expanding his search for prevalence markedly.
• The CDC’s HIV division examined CDC samples in collaboration with the Robert Koch Institute in Germany and the Univ of San Francisco. They did not find XMRV using antibody or PCR tests.
• 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.
• Dr. Paul Cheney reported high rates of XMRV positivity in patients from around the US and the world tested by VIP Dx labs.
• CDC’s HIV Division is reportedly testing samples from Cooperative Diagnostics Lab in an attempt to analyse samples from more severely ill CFS patients.
• 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
• Edmonton, Canada study at the University of Alberta started last month. (Open only to Edmonton residents)
• Dr. Enlander in New York City is attempting to coordinate a blinded study that shares samples amongst several labs.
• Dr. Felsenstein at Mass General has reportedly wrapped up a study and is shopping the paper for publication
• Dr. Hanson starts the first NIH granted XMRV CFS study ever. It examines XMRV and many other factors in a repeat exercise study looking, apparently, at Dr. Bell’s pediatric cohort from the 1980’s. It’s slated to be done May, 2012. In her initial effort she found 50% XMRV (or pMLV) positivity.
• Hemispherx is reported testing Ampligen responsive patients at WPI. At the XMRV Int. Workshop they reported that about 2/3rds of patients tested positive and that the sicker patients with XMRV did better on Ampligen than other patients.
• The Health and Human Services Working Group on XMRV will have oversight over the federal effort on XMRV.  Dr. Mikovits and Dr. Vernon,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. Brigette Huber of Tufts University tested several hundred samples from physicians in the US for an enzyme XMRV produces. She was able to recover the enzyme from samples the WPI provided but not from the CFS patients. This study did not find XMRV
• 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. Joliceur at L’Institute de recherche is reportedly engaged in another XMRV study (7/10)
• Dr. Nancy Klimas – is reportedly sending sample from ME/CFS patients in her ongoing “Good Day: Bad Day” study  and Gulf War syndrome patients to a lab
• Dr. Ian Lipkin is leading a large NIH effort under the direction of NIAID Chief Anthony Fauci to determine if XMRV is present in ME/CFS across the US.
• Ian Lipkin in Columbia is working with Dr. Montoya at Stanford to examine pathogen presence in a  select group of ME/CFS patient.s
• Dr. Vincent Lombardi was the lead author in the original XMRV study in the Science Journal that, in collaboration with the WPI, the NCI and Cleveland Clinic, found XMRV in about 2/3rds of people with ME/CFS and 4% of healthy controls
• Dr. Mikovits reported in Sept that a study showing a immune signature is present in XMRV positive patients will probably be published sometime around Dec.
• Panorama Research Institute in Sunnyvale, Ca. is developing their own XMRV test for CFS. (They were advertising on Craigslist for patients)
• Dr. Singh’s autopsy study will reportedly probably be published sometime around Dec of this year.
• Dr. Illa Singh, Dr. Light and Dr. Bateman and ARUP are working on a second larger, multi-dimensional XMRV study after the first study (apparently) had positive results. Read about it here.

• Dr Kate Bishop in the UK is leading a effort to determine XMRV prevalence in the general UK population and in ‘patient groups of interest’.
• Dr. McClure has reported she will be doing culturing tests on WPI positive patients.
• Dr. DeMeirleir and RedLabs in Belgium are collaborating on an XMRV study. At the XMRV Int Workshop Dr. De Meirleir reported study had positive results and possibly uncovered an AID’s like immune signature.
• 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. At the XMRV Int. Workshop this study had high rates of positive results.
• another UK study from the University College London College London involving Dr. Kerr, Dr. Gow, Dr. Groom and Dr. Bishop – this study did not find  XMRV
• 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. At the Int. XMRV Workshop this study was reported to have negative results
• Institute Ferran in Spain – 100 patients with demonstrated abnormalities on repeat exercise tests/100 controls Study begins – January 2010. Some reports suggest the study may be in trouble.
• 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

• New Zealand – some reports suggest a New Zealand study is close to getting underway.

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!