XMRV Questions and Answers from wpinstitute.org

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* What is XMRV?

Researchers at the Whittemore 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. Silverman, in prostate cancer

tissue of men with a specific genetic defect in their antiviral

defense pathway. Prior to the Whittemore 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?

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.

* Is there a test available for XMRV? I think I have ME/CFS or have

been diagnosed with this.

The WPI has developed a blood test for the detection of XMRV. The

test is currently undergoing clinical evaluation and validation. We

hope to have a clinical test available to the public within

the year.

* How is XMRV transmitted?

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?

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?

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

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?

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 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 Institute get the blood samples

used for this study?

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?

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?

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?

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?

Guidelines will be established as more is leaned about XMRV.

* Who discovered XMRV?

XMRV was originally discovered in prostate cancer tumors by

Dr. Silverman. Scientists from the Whittemore

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?

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?

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?

ME/CFS is not a woman's disease. In fact the epidemiological

study done by Dr. Lenny 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?

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?

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.