‘XMRV on everyone’s mind at a Chronic Fatigue Syndrome neeting’

October 16, 2010

From the Wall Street Journal, 15 October 2010 (Story by Amy Dockser Marcus)

The Chronic Fatigue Syndrome Advisory Committee — which advises the head of HHS on policy and scientific issues related to CFS — just wrapped up its latest meeting. During three days of presentations and debate (you can watch it all here), it was hard to avoid talking or thinking about XMRV.

That’s the retrovirus that was linked to CFS in a study published last year in the journal Science. Scientists have been debating the finding ever since, with some labs finding the virus in a majority of CFS patients and other labs not finding XMRV in a single case.

At the meeting’s public comment period, CFS patients pressed for more funding to study XMRV and to launch clinical trials. Many of the patients wore shirts with “NIH: What have you done for ME/CFS today?” emblazoned on the front. And some held up “Act Now” placards. (”ME” refers to myalgic encephalomyelitis/encephalopathy, another term used to describe the condition.)

For the first time, an extra day was added to the advisory committee meeting to focus solely on scientific developments; XMRV got prominent billing. In its final recommendations to HHS, the committee called for the creation of a national clinical trials network. “When [the science behind] XMRV gets sorted out, we’ll be ready to jump,” advisory committee member Nancy Klimas, a University of Miami professor who runs a CFS clinic and researches the condition, tells the Health Blog.

The idea, Klimas says, is to set up a network of at least five centers to serve as a kind of hub for research, clinical care and education. Doctors would start collecting standardized clinical and research data from patients at the sites, and teams of investigators would work together to develop common clinical trial protocols to start pushing drug development for CFS.

Yet a number of scientists at the meeting expressed caution about XMRV. Stuart LeGrice, who has helped lead XMRV efforts at NCI, gave the scientific talk on the virus and urged patients to wait until more is known before taking anti-retroviral medications. (Some are already taking the meds, as the WSJ reported recently.) “We’re not far from a controlled clinical trial,” he told participants during a Q&A session.

And while XMRV is a hot topic, Christopher Snell, the chair of the advisory committee, said at the meeting that research on XMRV has “overshadowed” other possible CFS research avenues. Klimas tells the Health Blog that research in CFS is finally yielding a number of possible therapeutic strategies that spring from other hypotheses unrelated to XMRV.

However, for patients like Robert Miller — who testified at the meeting — it’s clear what’s providing the momentum in CFS research. “This all started because of XMRV,” he said.

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