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* Whittemore Peterson Institute's Notes

RGJ Hundreds Request test for Retrovirus
Yesterday at 9:46am


November 3, 2009


Hundreds request test for retrovirus

BY LENITA POWERS
lpowers@rgj.com

Overwhelmed by requests from people seeking to have their blood tested for a new retrovirus discovered by researchers at the Whittemore-Peterson Institute for Neuro-Immune Disease in Reno, the institute has arranged for a local laboratory to do the testing.

The flood of requests for blood tests began after the Whittemore-Peterson Institute published a research study in the Oct. 8 online journal Science that showed the prevalence of the retrovirus XMRV in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Viral Immune Pathology Diagnostics (VIP Dx), a small state-certified laboratory in Reno, temporarily will provide testing for the retrovirus XMRV for physicians who request it for their patients at a cost ranging from $400 to $650.

Institute officials said the hope to enter an agreement with a larger laboratory that could handle the demand nationwide, Annette Whittemore, the institute's founder and president, said Monday.

"We've gotten hundreds of requests for the test from around the world, but we can't offer it outside the United States yet," she said.

The institute plans to eventually make the tests available in other countries.

"The way people access clinical laboratory tests in other countries is very different than in the United States," Whittemore said. "Each country has its own standards and requirements, so until that situation changes, you have to work within each system. It takes a little while and we are working as quickly as we can with many different scientific groups in order to continue the process."

She said the institute's study showed its tests have demonstrated the presence of the XMRV retrovirus in 67 percent of patients with Chronic Fatigue Syndrome, but the results have to be replicated in an independent laboratory to confirm them.

Those studies are under way.

Another major step is to determine whether insurance companies will then cover the tests, Whittemore said.

The net proceeds from the tests for XMRV and other tests that aid the diagnostic process will be used to further the Whittemore-Peterson Institute's research, she said.

The tests VIP Dx offers uses the same validated technology developed by Judy Mikovits, the institute's lead researcher, and her colleague Vince Lombardi, primary investigator on the research and first author on the paper published in Science.

Lombardi also is director of operations at VIP Dx, which is independent of the institute.

VIP Dx began providing test kits on Oct. 23 to doctors and clinicians, who send blood drawn from patients back to the laboratory by overnight FedEx to be tested at the Reno lab.

Additional Facts
To get the test
Visit RGJ.com for a link to the Reno laboratory's Web site with more information about how doctors and clinicians can get the XMRV test kit.

HEY..HELLO EVERYONE
I AM GREATFUL FOR ALL THIS USEFUL INFO....I AM BEING TREATED FOR NARCOLEPSY AND HAVE FOR MORE THAN 8YEARS BUT NOW I HAVE DOUBTS ON MY DIAGNOSIS AFTER
LISTENING ON FM RADIO ABOUT- CHRONIC FATIGUE SYNDROME BY A DR. IN NEVADAY.I CAN RELATE IN MANY WAYS TO THE SYMTOMS AND I AM GOIN TO TALK/DISCUSS IT WITH MY NEUROLOGIST ON MY UPCOMING APPOINTMEN.
THANK YOU ALL FOR ALL THIS GREAT INFO:)

And then, a lot of these folks who get tested may find out they become UNINSURABLE with the diagnosis if they lose their current insurance.

I agree, Kweebs. I'm in no hurry to get tested for it. I've been living with CFS for more than twenty years, and MCS for more than ten.

Yeah... I think we need to start looking at the HIV organizations for partnership on Insurance discrimination and such when tests start becoming available. We would probably do well to see some of their coping strategies for this.