In early October the Whittermore Peterson Institute came out with a suprising announcement that may change everything we think about CFS. They found a new retrovirus called the xenotropic murine leukemia virus-related virus (or XMRV) in 67% of a study group (with more sensitive testing this number went to 90%+), as opposed to 3.75% in their controls out of a total of 101 patients. At this point it’s unsure whether it is the cause of CFS or just a co-infection (similar to EBV, HHV-6, CMV).
Because there was such an extreme lack of information of the science around CFS, This discovery has caused an explosion of media attention including articles in the New York Times, Science Magazine, and even the Dr. Oz show.
So, what is a retrovirus?
A retrovirus is an RNA virus that inserts its own genetic code into a host cell’s cytoplasm. This host cell then produces DNA from the virus’ RNA template. The new viral DNA has the virus’ genetic code incorporated into it and
begins to produce more RNA viruses.
Although the XMRV virus is in the same category as the HIV virus (also a retrovirus), there are key differences. HIV is an extremely difficult virus to treat because it has an very rapid rate of mutation, and treatments may become ineffective after a period of time. On the other hand, XMRV is a slow-growing virus and will have a slower rate of mutation, so it might be easier to develop anti-viral medication and effective treatments. Some doctors think that the drugs used to treat HIV, may also be effective at treating XMRV (but this isnt confirmed).
So, if the XMRV virus is confirmed as the cause of CFS, what drugs might treat it?
It is not known yet if drugs used for HIV are effective against the XMRV virus. But one study shows that the drug AZT (a nucleoside analog reverse transcriptase inhibitor ) is effective at stopping the virus from replicating and infecting more host cells. Also another study which looked at XMRV in men with prostate cancer, tested protease inhibitors. and 10 other anti-viral compounds used to treat HIV, In this study, only AZT was found to be effective against XMRV. But a virology professor at Columbia University stated that, “It is not known if treatment with AZT will effect either prostate cancer or CFS. If prostate cancer is triggered when XMRV inserts into chromosomal DNA, then the drug will not likely block progression of the disease because the drug does not eliminate infected cells.”
One unique idea about XMRV by Dr. David Bell, is that XMRV may serve as a “Puppet Master”, and allow viruses (EBV, HHV-6, CMV) to be expressed in an abnormal way. He states that “Perhaps [XMRV] pulls another string to cause EBV to be more active, or Lyme, or enterovirus? Another string to alter RNAse L?”.
So, how is XMRV transmitted?
It is unknown how XMRV is transmitted, but some doctors assume that it can be transmitted in ways similar to HIV. (Through blood contact, sexual transmission, or from mother to child) Dr. Nancy Klimas even suggested that the virus could be inherited in the DNA! and passed down form generation to generation.
Where can you get tested for XMRV?
The Whittermore Petterson Institute endorses a lab called VIPDX in Reno, Nevada to perform the XMRV testing. VIPDX are licensing the same technology from WPI for testing and the pricing is as follows: PCR for active infection ($400), Virus culture for latent infection ($500), Or both the PCR and virus culture ($650).
The WPI studies are currently being replicated by almost a dozen research outfits that i have read about and the outcomes of this will determine how significant this finding is. If this is confirmed, the XMRV virus that will draw alot of needed research dollars and attention from people outside the CFS community due to the fact that there could be an infection of the blood supply and it is also linked to some cancers.
If you would like to volunteer for upcoming Whittermore-Peterson clinical trials, complete this questionaire
or for more information contact:
Research Program Coordinator
Whittemore Peterson Institute
6600 N. Wingfield Parkway
Sparks, NV 89436
patientinfo@wpinstitute.org
In science there is something called reproducibility. So far, I have not seen any studies that back up the Whitmore data. In fact I have sources that tell me that in roughly 400 prostate cancer patients tested for the XMRV antibodies or DNA, by a reputable pharmaceutical company, no virus was detected. If we are to believe the inital data by the Whitmore group then 2-3% of the people tested should have been positive.
Another CFS cohort on the east coast has been investigated for the XMRV viral DNA as well. Using the same primers and PCR based techniques used in the Science paper, no XMRV viral DNA has been isolated.
What can only be said so far about XMRV is that it is a human retrovirus.
You say that “another CFS cohort on the east coast has been investigated for the XMRV viral DNA…Using the same primers and PCR based techniques used in the Science paper, no XMRV viral DNA has been isolated.” Has this been published?
If not, it’s not up to the same standard as the original finding.
The negative finding in the UK study is completely irrelevant as that study didn’t use the same methods as the Whittimore Peterson study.
here’s a statement someone from the WPI left on the forum:
Official Statement from the Whittemore Peterson Institute Regarding UK Study
The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland Clinic, therefore it cannot be considered a replication study nor can the results claim to be anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.
The scientific methods used by WPI are very exact and require specific techniques to ensure accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences include, but are not limited to the following:
1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which were not validated by a clinical control.
The WPI study was published after six months of rigorous review and three independent lab confirmations, proving that contamination had not taken place and that infectious XMRV was present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria. In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.
“Little is known about the prevalence of XMRV world-wide, much less the incidence of XMRV in ME/CFS or prostate cancer” emphasizes Dr. Judy Mikovits. “WPI and its NCI collaborators are actively engaged with international research teams to investigate these important questions.”
WPI does not recommend the use of anti-retroviral drugs that have yet to be proven to be effective in treating XMRV infection. However, several large pharmaceutical companies have expressed interest in developing anti-retroviral and immune modulating drugs that will effectively treat XMRV associated diseases.
WPI looks forward to the results of other scientific groups around the world, serious about replicating its scientific results, by using the same techniques as WPI and its collaborators. The fact that XMRV was detected in 67 percent of the CFS samples in the U.S. study determined a significant association between XMRV and CFS, demanding a much more serious inquiry by responsible health agencies around the world as to the cause of this debilitating disease.
I had a support group for Fibro in the small town I live in and over the years with research, I have found that many may have the same symptoms, but we all react differently to them. I watched a doctor on TV talking about the benefits of Niacin (OTC supplement) and thought with my husbands family history of heart disease that I should get him on it and I started taking it too. It has almost wiped out my CFS!!!!!! The only side affects of taking it is called Flusing……where your skin gets red and you feel toasty warm for just a few min. That doctor said, DO NOT TAKE THE TIME RELEASED Niacin as it will affect your liver. I have also found just recently that Spring Valley makes a non flush niacin! I take 100mg first thing in the morning and have been amazed that I am not ‘foggy’ any more!!!
Kemist99 said: “tested for the XMRV antibodies or DNA, by a reputable pharmaceutical company”
Pol Beith asks: Are there reputable pharmaceutical companies ?
I have been doing some research into XMRV and chronic fatigue which is posted here http://polygenicpathways.blogspot.com/2010/07/proteins-of-xmrv-retrovirus-implicated.html and also at a preprint at Natureprecedings http://precedings.nature.com/documents/4669/version/1 This is not yet published in any journal but I think it is important.
I also run a blog/forum where I am trying to highlight the relationships between genes and risk factors, especially viruses, which might interest your readers.
Dr Chris Carter
Just to explain the significance of this. The XMRV virus contains proteins that are very similar to the proteins expressed in human mitochondria, the powerhouses of the cell, responsible for respiration and energy generation. They are also similar to proteins involved in prostate cancer. These viral proteins are antigenic, and antibodies to the virus may also target their human counterparts and interfere with their function. Even if the immune response has successfully eliminated the virus, the antibodies are still present, and because they keep on meeting the human lookalike proteins, the immune response becomes self-sustaining. This may explain the controversy regarding the presence or absence of the virus. The XMRV virus doesn’t have to be there, it just needs to have been there at some time in the past. The more effective the immune attack on the virus, the greater the danger of autoimmunity.
See http://polygenicpathways.blogspot.com/2010/07/proteins-of-xmrv-retrovirus-implicated.html