WSJ Health Blog
By Amy Dockser Marcus
October 15, 2010, 12:09 PM ET
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.