Interim XMRV Guidelines National Cancer Institute, testing and CFSAC meeting

Interim XMRV Guidelines National Cancer Institute, testing and CFSAC meeting videocasts Media Round up: 17

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Find all previous Media Round ups, including patient organisation statements, archived under the XMRV Category tab.

Patient representation organisation statements

CFIDS Association of America

Interim XMRV Guidelines from National Cancer Institute

(Following the Oct. 8 publication by Lombardi et al in Science linking CFS and xenotropic murine-related retrovirus (XMRV) (see page 1), the CFIDS Association of America requested guidance from the National Cancer Institute about XMRV for persons diagnosed with CFS, their loved ones and the general public. The following are interim guidelines excerpted from a letter received from NCI director Dr. John E. Niederhuber.)

Interim XMRV Guidelines from National Cancer Institute

We at the National Cancer Institute (NCI) have great interest in these initial research findings. At present, we agree that a critical issue to be addressed is whether the exciting recent results obtained using samples from the Nevada cohort can be reproduced in additional cohorts of CFS-afflicted individuals. The NCI is striving to develop tools so that the general prevalence of XMRV in the population can be ascertained, and the association of XMRV with disease can be examined.

In the meantime, it is very important to reiterate what we do not know at this point, specifically:

We do not know whether XMRV is a causative agent for CFS, prostate cancer, or any other disease. Even if a causal association can be established, it may be only one of many causes, and there may be other factors, genetic or environmental, that determine the outcome of infection. At the moment, there is no evidence of CFS transmission between family members, even though XMRV appears to be an infectious agent. Thus, it is unclear whether XMRV alone underlies CFS.

We do not know how XMRV is transmitted from individual to individual. Recent suggestions of sexual or salivary transmission are not based on direct evidence, and conclusions regarding transmission are not credible at this point. Given the frequent isolation of virus from white blood cells, blood-borne transmission is a real possibility, and, while we are not in a position to establish firm guidelines, prudence would dictate that potentially infected individuals refrain from blood donation at this time.

We do not know how many apparently healthy individuals are infected, and what the distribution of infection is within the U.S. and in the worldwide population. The National Cancer Institute is involved in coordinating a global effort to study these issues.

It is very important to keep in mind that there is no evidence for a new increasing or spreading XMRV infection. Further, no credible evidence exists for direct transmission of either CFS or prostate cancer.

John E. Niederhuber, M.D.
Director, National Cancer Institute
U.S. National Institutes of Health
Department of Health and Human Services
October 23, 2009



Cooperative Diagnostics Offers Test for XMRV Virus – By Mail, “No Lab Visit or Doctor Approval Necessary”

October 26, 2009

Cooperative Diagnostics, LLC has announced the availability to the general public of a new diagnostic assay for Xenotropic Murine Leukemia-Related Virus (XMRV). For details, go to

Those interested in obtaining a blood sample collection kit (price $399) may complete an online form at the Cooperative Diagnostics site. According to the instructions:

• A sample collection kit will be sent to the address you submit within 2 to 3 business days.

• You place a drop of your blood on a filter paper that is provided and return the envelope to the lab, where the test will be completed.

• Within 5 to 7 business days after the lab receives the sample you will be sent an e-mail with the test results.

• The test results may be printed to show your physician.

Positioning the test as intended “to assist physicians in the diagnosis of ME/CFS and other disorders potentially caused by the virus, Cooperative Diagnostics cautions that it “is not intended to indicate the presence of absence of CFS or other X-associated neuro-immune diseases. Consultation with your physician is necessary to interpret the results.”  Read full piece here


CFSAC meeting

From: “RESCIND”  via Co-Cure
26 October 26 2009

Log on and be counted!

Please distribute far and wide!

For those who won’t be attending the CFSAC meeting, be sure to tune in to the videocast of the CFSAC meeting on October 29th and 30th at the following links:

Day 1

Day 2

The number of computers logging on and watching will be counted by the NIH. Let’s make those figures count for something!

For those who can’t watch live, archived video will be available at:


Click for   AGENDA  

CFSAC Agenda – October 29-30, 2009

U.S. Department of Health and Human Services


The Definition Petition

Petition webpage:

We call on the Centers for Disease Control and Prevention (CDC) to stop using the “empirical” definition[1] (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.

The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition[2]. However the prevalence rates suggest otherwise: the “empirical” definition gives a prevalence rate of 2.54% of the adult population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].

The definition lacks specificity. For example, one research study[6] found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.

If you haven’t already signed it – sign the CFS Definition Petition today at: