The Gulf War Veterans Who Are Ill Await News from the International Meeting of XMRV/MLV Researchers at the NIH

The gulf war veterans who have been diagnosed with chronic fatigue and fibromyalgia await news also and wonder when they will be a cohort group for testing.  Many are anxious to be tested just to get some kind of answer.  As yet the VA has not even discussed this development.  One of the VA Researchers that is also tracking the developments is Dr Nancy Klimas in Florida.  It seems that the VA has very few virologists on staff or in research in this area that has taken an active interest to get answers now.  Some veterans are seeking ways to get their blood tested and paying the cost of the tests just to get a step closer to eventual treatment.  Twenty years is a long time to be waiting for help and answers.  Twenty years of declining health and a lack of true diagnostic testing and biomarker development.  The question is why is the VA not more agressive in sending veterans blood to be tested?

This is breaking news and has only been out there since the very first positive scientific paper was published a little short of a year ago. At the end of August the second positive findings paper was published.  There is talk of other positive results that are yet to be published.  The safety of blood donation is a key consideration and therefore this is a scientific priority!  The symptoms of neurocognitive problems was also known to AIDS patients just not highly talked about during the race for discovery in that field.  This retrovirus, a human gamma type, could be the key to neurocognitive problems, to the problem of hypercoagulation and to metabolic problems that would affect the autonomic nervous system, the endocrine system, the cardiovascular system, and to other bodily systems. 

There is much to learn and millions of people, patients, are waiting for help!  Does this group of patients have to be taking a page from the Act Out Phase of the AIDS episode?  WE at VT encourage every single person that is reading our news to take action by calling your congressman and your senator to demand testing for our veterans and for the millions of other CFS/ME patients.  WE need answers now not later!  WE ask that you write letters to your elected officials, email them, fax them, call them let them know this is a health issue that demands answers now!  This is a national priority and a national security issue.  We spend billions of dollars to help other countries to battle AIDS it is now past time to bring that money to a more crucial issue and to get answers for our veterans and our own citizens that have been mistreated and maligned for twenty years or more!  How would you like to not be able to function and going thru the turmoil that a chronic illness can wreck on a personal life for example isolation, financial destitution, and family difficulties and be told that it is just psychological!  What a disgrace!

It is like having cancer without being able to get answers, testing, diagnosis, treatment, and support!  It is like having kidney failure and receiving no medical and watching as someone slowly but surely becomes more and more a step to the next world.

WE have spent so much on war making and war fighting that medical science in the US has suffered.  We can and must do better!  The US used to be a leader in the medical world and we can be again if we just reorder our priorities!  Below is the latest news on the International Scientific Meeting that is occuring at the NIH in Bethesda now.

Cleveland Clinic researcher helps organize international XMRV meeting

Published: Wednesday, September 08, 2010, 6:00 AM

CLEVELAND, Ohio — A Cleveland Clinic cancer biologist is one of the organizers of a two-day meeting of scientists, physicians and epidemiologists taking place Tuesday and Wednesday at the National Institutes of Health.  

The first International Workshop on XMRV, co-sponsored by the National Institutes of Health and Abbott Labs, is expected to draw more than 200 people. Among the attendees will be representatives from the pharmaceutical industry; the CFIDS Association, an advocacy group for people with Chronic Fatigue Syndrome; and a blood supply task force.

Last November, Silverman helped convene a gathering in Cleveland of 75 of the top scientists from 14 institutions across the country. Behind closed doors, they discussed their work on XMRV.

A couple weeks later, Silverman attended another XMRV-focused gathering. There, a scientific colleague from the Netherlands approached him about organizing a larger, more international effort.

XMRV is one of three known human retroviruses. The other two are HIV and HTLV (a type of virus that infects white blood cells and can cause leukemia and lymphoma). All three are transmitted through bodily fluids.

The two, who have been researching the link between XMRV and prostate cancer development, are part of the team of researchers who initially discovered XMRV in 2006 when they found it in prostate cancer tumors.

Silverman also was part of a team of researchers from the Clinic, the University of Nevada at Reno and the National Cancer Institute that in 2009 reported a link between XMRV and chronic fatigue syndrome. Clinic researchers are currently working on developing a test to screen for the presence of XMRV.

Silverman is a paid consultant for Abbott Labs and is entitled to royalties for inventions or discoveries related to the company.

“There are some very disparate results coming out of different labs right now,” Silverman said. “We’re dealing with a very new topic in science. One of the purposes of the meeting is to get people together to sort it all out. The science is still in the early stage.

“Personally, I’m hoping to learn more about XMRV, it’s fundamental properties and the diseases that it could possibly be linked to,” he said.

The public is invited to follow the conference on Twitter @ClevelandClinic. NIH also will hold a web cast of the wrap-up question-and-answer session at 5:15 p.m. Wednesday. The web cast link is videocast.nih.gov/summary.asp?live=9582