July 16, 2010 posted by Denise Nichols
The battle over CFS/ME/GWI continues to heat up.
The Wall Street Journal is tracking the issue of XMRV retrovirus research. I told all the gulf war veterans to hold on and I meant it this is going to be a long struggle. The civilians with Chronic Fatigue/ME are in full battle mode. Yes we have at least 2 gulf war illness researchers tracking this issue but no answers yet.
The struggle to replicate the initial findings of a new retrovirus- XMRV- published in 2009 are in full international science realm. Hopefully, the gulf war veterans are vested and keeping track by reading.
Yes we need to have gulf war veterans tested but personally I want the WPI in Nevada to be validated ASAP! No insurance company will phony up to cover cost when this is stuck in research. WE as well as civilians suffering with chronic fatigue syndrome/ME need answers! The civilians have been involved for 25 years and gulf war veterans 20 years.
What I can reccommend to gulf war veterans is to keep reading and tune into the webnairs! I will keep you all as updated as I can! WE can also all keep writing our elected Representatives and Senators to increase CDMRP funding for Gulf War illness and let them know we want answers just like the civilians with CFS. WE want diagnostic testing and treatment that gets to real answers for us all! But for now I will post the Wall Street Journal Blog on the issue and thank WSJ’s Amy Dockser Marcus for reporting on the issue and encourage her to keep it up!!:
WSJ Blogs
Health Blog
WSJ’s blog on health and the business of health.
Potential XMRV-Chronic Fatigue Syndrome Link Not Easy to Tease Out
By Amy Dockser Marcus
The controversy surrounding XMRV, a virus that has been linked to chronic-fatigue syndrome and prostate cancer, has been heating up recently.
http://blogs.wsj.com/health/2010/07/15/potential-xmrv-chronic-fatigue-syndrome-link-not-easy-to-tease-out/
Earlier this month, CDC researchers published a paper in Retrovirology that reported the absence of XMRV in either the CFS patients studied or healthy controls. A much-anticipated study by researchers from the FDA and NIH supposedly reached a different conclusion, finding the virus in the blood of CFS patients. It’s expected to run in the journal PNAS but has yet to be published.
So lots of people are waiting for answers — patients anxious to find out whether their disease is linked to XMRV, scientists interested in learning more about what is only the third known human retrovirus and public health officials trying to determine whether XMRV could affect the nation’s blood supply.
And that wait may not be a short one, say experts participating in a webinar today sponsored by the advocacy group CFIDS Association of America. Vincent Racaniello, a professor of microbiology and immunology at Columbia University, said that there’s a lot of work yet to be done in patients in order to answer the key questions surrounding the issue, and the full dimensions of the XMRV story will take time to understand.
“We can learn a lot from history,” he said on the webinar, noting that it took 15 years from the time clusters of AIDS patients were identified to the development of effective therapies. Racaniello doesn’t study XMRV in the lab, but he blogs about the controversy.
In a follow-up chat with the Health Blog, Racaniello said that so far, all the published studies have been done in relatively small numbers of patients — 50 or 100 people.
What’s needed to really get answers, he says, is a 500- or 1,000-person, federally funded study conducted at more than one research site. Ideally participants would be existing CFS patients who’d be available to be interviewed for detailed medical and case histories, and who could give fresh blood samples. And centers would use uniform definitions of CFS and lab methods, he said.
Another webinar participant, Lucinda Bateman, an internist who evaluates CFS patients at her Salt Lake City clinic, says that up until now there’s been “no consistency in the way we diagnose and treat patients” with CFS. Potential treatments for XMRV infection exist, she says, but there are plenty of questions about which are safe and effective — and sorting all that out will take (you guessed it!) — time.
Still, that’s not to say that the scientific process — and the debate — hasn’t been fruitful, she says. Even negative studies help shape the direction of future research, and the differing results of the published studies have led to greater scrutiny of the way CFS is defined.
Interest in CFS is growing in major academic centers and attracting more scientists. And more people are donating money to help fund CFS research, she adds — which eventually should lead to the kinds of trials that Racaniello and others want to see done.
http://www.veteranstoday.com/2010/07/16/will-gulf-war-veterans-be-tested-for-xmrv/
