Interim XMRV Guidelines from National Cancer Institute
Following the Oct. 8 publication by Lombardi et al in Science linking CFS and xenotropic murine retrovirus (XMRV), 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:
1. 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.
2. 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.
3. 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 National Institutes of Health U.S. Department of Health and Human Services October 23, 2009
Note: According to Dr. Wanda Jones of DHHS, these issues will be discussed by representatives from DHHS, NIH and other federal health agencies at the upcoming federal CFS Advisory Committee meeting on Oct. 29-30, in Wash DC.
THAT's the meeting BELOW I have been asking your to turn your computers ON to watch or at least RUN and then watch the arcived reply later..but we need the "head count" by the NIH.....Thx
THANK ANY Journalist that reports that ME/CFS "is" a SERIOUS Disease, Please!!.
There was an error in this gadget
Most Recent Readers
Notable "Public" sufferers with ME/CFS
nurse with ME/CFS-post
Crimean War (1853–56) * Michael Flatley "Lord the Dance"~"RiverDance" *Susan Harris screenwriter for: Golden Girls, All in the Family, Soap, Benson & Advocate Michelle Akers soccer player
Brian Aldiss author Susan Blackmore parapsychologist, author Howard Bloom evolutionary psychologist, author Neil Codling formerly of Suede Blake Edwards *RIP 12/22/2010* writer and director of such movies as 'Breakfast at Tiffany's', '10', and 'The Pink Panther', Julie Andrews husband John Fahey folk guitarist Flea musician Clare Francis international yachts-woman and author Laura Hillenbrand author of the book 'Unbroken: A WW2 Story of Survival' Kelly Holmes athlete Keith Jarrett jazz pianist Katharine Duchess of Kent Alastair Lynch Australian footballer Stuart Murdoch of the band 'Belle & Sebastian' Randy Newman musical composer, performer, singer Lauren Cuthbertson The Royal Ballet Barry Sheen motorcyclist
Documenting the Life of Surviving with ME/CFS and OI/POTS and Invisible Illness since 1987. Back then I got what I thought was a virus and thought I would only be down the usual 7-10 days. WRONG I kept fighting it for a few months, but in the end I had to Surrender to it, which is NOT Easy for someone that has always been very active, a multi-tasker, and a "Get it Done" kind of person my Whole life.
Here I was in the prime of my life about 38 yrs old and going strong until this. then WHAM Bang. I ended up Flat on the living room couch, awake or asleep, for the next 1.5yrs. Living alone I couldn't
even go grocery shopping or I would get the fever back. I was lucky enough to find someone to cook for me once a week. The funny part is that until then I had working in a hospital for the previous 17 yrs, I get sick and they have NO idea what it is. Ran many tests, everything came back normal, so I get NO help/NO disability/nothing.
Even when I did calm things I liked the fever & associated feelings would come back. Yuppie flu? Never was ~ Never will be. Ever known anyone that had EBV ? Well THIS is it's BIG Brother, but a LOT Nastier at this point now 28 years.
I am SO sorry to announce that lately I have had to implement "moderating comments" due to SPAM comments that are trying to come thru, and I do NOT want you OR this blog subject to the type of inappropriate material that these SPAMs contain.. so Please KNOW that I WILL "approve your post" ASAP~ Thanks for your understanding... Hope you will be AWAP ♥ and Even BETTER Soon.
ALERT: If you are posting in a language OTHER than English, "PLEASE use a Google translator to translate it INTO English FIRST." If I can NOT even use the Translator to READ your post... It WILL BE DELETED.
❤ LIVE ❤ LOVE ❤LAUGH❤ Each Day We HAVE is "Precious." ********************************
**************************************************** Please be advised that NOTHING in any of the posts on this blog OR its associated links is meant as Medical Advice by this blog. Please consult with your Medical Professional before doing anything new or adding anything new to your daily routine of how you care for your health.