XMRV was found to be postive in 95% of CFS plasma vs. 67% in blood! Whittemore Peterson Institute - XMRV Q & A

October 20, 2009

Passing this along FYI.............

Clare in Tassie

"XMRV has now been found in the PLASMA of 95% of those with ME/ CFIDS vs. 67% in the blood and also found in Fibromyalgia (which I believe are one in the same). We are very close to treatment that really works for this devastating illness!! Check out the Q & A from the research team that found this Retrovirus (XMRV)!"

“Chance favors the prepared mind.”

Pasteur

Overview In The News Research Team Q & A

Questions and Answers

What is XMRV? [view answer...]

Researchers at the Whittemore Peterson Institute in collaboration with the National Cancer Institute and the Cleveland Clinic, have recently discovered the presence of a retrovirus in blood samples from patients diagnosed with chronic ME/ CFS. The human retrovirus, identified as XMRV, has now been found to be in over 95 percent of the patients’ blood samples in this study group.XMRV is a human retrovirus and is similar to HIV and HTLV-1. It was first identified by Dr. Robert Silverman, in prostate cancer tissue of men with a specific genetic defect in their antiviral defense pathway. Prior to the Whittemore Peterson Institute study, XMRV had not been isolated from a human diseased population or been shown to be infectious and transmissible.

What is the link between XMRV and ME/CFS, fibromyalgia and other neuro-immune diseases? [view answer...]

Our initial research showed that 67% of the ME/CFS patient samples tested positive for XMRV. Further work has found that 95% tested positive. Work continues to understand how this virus works within neuro-immune diseases, but this discovery proves a significant correlation between this serious retrovirus and these diseases. Our work suggests, but does not prove, that XMRV may be the underlying cause of ME/CFS. Much additional work needs to be done to understand how XMRV causes disease and what types of diseases it is linked to it.A few fibromyalgia samples were tested and yes, they were positive. However the sampling was very small, and testing will have to continue on a much larger scale to begin to draw significant conclusions. In addition, many patients with ME/CFS have been given the diagnosis of fibromyalgia when in fact they have ME/CFS and fibromyalgia.

Where can I get tested for XMRV? [view answer...]

The WPI has developed a blood test for the detection of XMRV and we are currently negotiating an agreement with a clinical laboratory to allow for limited testing. These services will be made available as soon as possible and we will provide information on this site as to how the test can be requested. We cannot offer individual testing and results from our research lab. Please check back here for updates.

How is XMRV transmitted? [view answer...]

XMRV is thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air. It is not known whether XMRV is more easily transmitted than other human retroviruses.

Is XMRV airborne? [view answer...]

No, retroviruses are not traditionally airborne viruses. However, since XMRV is a blood borne retrovirus, it may be possible to transmit through sexual contact, sharing needles, blood transfusions, and breastfeeding. Sharing household items like toothbrushes, razors, or items that come into contact with blood is not recommended as a precautionary measure.

What does it mean if I am infected with XMRV? [view answer...]

The research continues to fully understand the connection between ME/CFS and XMRV, as well as what it means to have the virus. We do not know all of the health ramifications of XMRV or ME/CFS, but we do know that some people with ME/CFS, have on average a lower life expectancy than someone without this chronic disease. In other studies XMRV has been detected in very aggressive cancerous prostate tumors. One may have XMRV and not have ME/CFS as evidenced by positive results of 3.7 percent of our control samples.

How do I volunteer for clinical trials or other research? [view answer...]

If you are interested in possibly being selected to participate in ongoing or future WPI research studies, we are working on an interactive form for our website. It should be available in the next few days. While every study has specific requirements and not all who volunteer will be accepted, your willingness to participate is both crucial and deeply appreciated.

Why was XMRV looked for in neuro-immune diseases? [view answer...]

Patients who have been diagnosed with ME/CFS have been shown to have a unique immune deficiency in a part of their antiviral system called the RNase L pathway. This pathway was also deficient in men whose cancer samples were first used in the discovery of XMRV. In this study, however, Whittemore Peterson Institute researchers have found XMRV in patients without an RNase L pathway deficiency. It is not known if XMRV causes this deficiency or if patients with this deficiency are more susceptible to the virus’ effects or both.

Where did the Whittemore Peterson Institute get the blood samples used for this study? [view answer...]

The blood samples used in this historic study were collected from several different regions within the United States and included both a known ME/CFS population and a control group. Of those diagnosed with ME/CFS, over 95 percent have recently been found to have antibodies to XMRV in their blood.

Can you catch ME/CFS? [view answer...]

Causation of ME/CFS is likely to be a multi-factorial process which occurs in a susceptible person with common viral co-infections. Chronic fatigue syndrome (ME/CFS) is a complex, systemic neuro-immune disease that is estimated to affect over one million Americans and 17 million people worldwide. ME/CFS has traditionally been diagnosed by the exclusion of other similarly presenting conditions, such as MS and lupus, and by a series of symptoms; making the diagnosis an expensive and difficult process. Until now, a single viral link (while suspected by many) had not been made because so many common viruses have been found to be reactivated in persons with ME/CFS. This finding suggests a role for XMRV in the pathogenesis of ME/CFS and creates a better understanding of the disease. Our work suggests but does not prove that XMRV may be the underlying cause of ME/CFS. Much additional work needs to be done to understand how XMRV causes disease and what types of diseases it is linked to it.

If I am pregnant or thinking about getting pregnant and have ME/CFS, should I be concerned about protecting my unborn child? [view answer...]

As a ME/CFS patient who is either pregnant or thinking about getting pregnant, you should speak with your physician regarding XMRV and safety measures you can use to minimize possible transmission of this virus to your child.

What can my doctor do for me if I test positive to the XMRV virus? [view answer...]

Research is still ongoing to determine the best treatments for those who are positive for XMRV. It is possible that antiviral therapies developed for other retroviruses may be useful against another RNA virus like XMRV. However, these are generally toxic therapies with considerable side effects making it imperative that one be very careful before beginning any new therapies. Obviously, only begin any therapies approved by your physician.

Are there federal guidelines for dealing with XMRV? [view answer...]

Guidelines will be established as more is leaned about XMRV.

Who discovered XMRV? [view answer...]

XMRV was originally discovered in prostate cancer tumors by Dr. Robert Silverman. Scientists from the Whittemore Peterson Institute, Cleveland Clinic and the National Cancer Institute were the first to discover XMRV in the blood of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients.

How many retroviruses are there? [view answer...]

Currently there are only three known infectious human retroviruses; HIV, HTLV-1 and 2 and now XMRV. HIV causes AIDS and HTLV-1 and 2 causes T-cell leukemia and T-cell lymphoma. XMRV is the most recent retrovirus discovered to infect humans and has been linked to neurological disease and prostate cancer.

I have been diagnosed with ME/CFS and recently tested positive for XMRV. My friends and family ask that if I am sick and have a retrovirus, why do I look normal? [view answer...]

Like other retroviruses known to infect humans, these illnesses appear to be invisible to the untrained eye. A physician, however, can see the signs of illness, and still must carefully examine the patient to know for certain who is ill and with what disease. Many diseases fall into this category. Unless one develops a disease that creates physical lesions that people can see e.g. psoriasis, the mask of lupus or the crippling bone changes of arthritis, most people can not see how debilitating the illness actually is. In addition, each person responds differently to treatment and therefore can maintain a higher quality of health and appearance of health. In the case of HIV, many people are infected but do not appear to be ill.

Most thought ME/CFS was a woman’s disease. But XMRV has been found in men with prostate cancer and now people with ME/CFS. What does this say about ME/CFS? [view answer...]

ME/CFS is not a woman’s disease. In fact the epidemiological study done by Dr. Lenny Jason has shown that this disease occurs in men and women and is also prevalent in children. Instances of outbreaks in which entire families and groups of friends became ill near the same time, have been reported across the US, the UK and other countries.

Does this latest information prove once and for all that ME/CFS is not a psychological or psychosomatic illness as described by those who don’t understand the disease? [view answer...]

Absolutely! Actually, there are thousands of research articles showing the very real biological problems that ME/CFS patient’s experience such as low NK cell count and function, MRI and SPEC scan changes, and repeated chronic infections, to mention just a few. Only the most stubborn and misinformed individuals refuse to believe that this disease is real and serious. The process of placing poorly understood illnesses into a psychological category is very similar to what happened in the early days of MS and epilepsy before the advent of technologies which proved the illnesses were “real.” Unfortunately, many in the scientific and medical fields have not learned from their past mistakes.

Is XMRV only in the United States or is it elsewhere? [view answer...]

For the purposes of this study, samples were collected from many different areas within the United States. However, as with other retroviruses, there is no reason to believe that the virus is not present in all other parts of the world.