Death of XMRV
by Jon Cohen on 27 September 2011, 11:46 AM |
The findings reported last week in Science that a mouse retrovirus
dubbed XMRV poses no threat to the blood supply provided great relief
to public health officials. New evidence suggests that researchers who
claimed XMRV and its relatives infected more than two-thirds of people
with chronic fatigue syndrome (CFS) used unreliable assays and also
had a contaminant mar prominent results published by Science in 2009.
But people with the baffling disease have had a decidedly more mixed
reaction to the "good" news.
Comments on CFS-related blogs include outright dismissal ("don't fall
for the sweeping conclusions"), attacks onScience for running the
report and an accompanying news article ("total crap" and the
"National Science Enquirer"), and continued high praise for Judy
Mikovits, the main scientist behind the theory ("In Judy We Trust").
Several stressed that Mikovits, researcher director of the Whittemore
Peterson Institute for Neuro-Immune Disease (WPI) in Reno, Nevada,
long has argued that XMRV relatives are linked to the disease=97not just
a single isolate of XMRV=97and that the new findings only sharpen the
hunt for the real culprits.
One blog poster, a clinician who tested positive for XMRV and began
taking antiretroviral drugs, praised Mikovits for a debate she had at
a CFS meeting last week in Ottawa, Canada, at which leading
researchers discussed the new findings. "The intrepid Dr. Mikovits
went up against Darth Vader today in Ottawa," she wrote (Darth Vader
being retrovirologist John Coffin of Tufts University in Boston,
Massachusetts). "In the face of incredible adversity, she took the
heat. For us. =85 May the force be with her. Brava!"
Several CFS community advocates who attended the Ottawa meeting said
their doubts about the XMRV hypothesis had grown over the past year,
as many labs failed to confirm the initial reports. Still, they urged
researchers to understand why some vocal patients have difficulty
abandoning the theory. "Take the most medically underserved community
in the United States, throw in a piece of scientific dynamite like
XMRV, and you're going to get an explosive and not always pretty
result," says Cort Johnson, who runs a popular blog called Phoenix
Rising. "How many 1-million person plus, highly disabling disorders
get a paltry $6 million dollars a year in research funding? There is
immense amount of anger and frustration directed at the federal
research establishment because of that."
Robert Miller, a CFS community advocate from Reno, said the 2009
Science report that linked XMRV to the disease gave him tremendous
relief. "I fell down on the floor and cried for 2 hours," says Miller.
"The way it was presented was: 'We found it, it's the causative agent,
and we're going to figure out how to fight it and cure it.'" He
subsequently tested positive for the virus at WPI. But Miller
represents many XMRV-positive patients who concluded several months
ago that their supposed infection likely was not meaningful and that
this putative promising lead was heading nowhere. "In my mind, XMRV
has been dead for a while," says Miller.
Marly Silverman, who founded a CFS patient alliance called Pandora
that's based in Coral Gables, Florida, says she, too, initially was
"ecstatic" about XMRV being linked to the disease and saw it as a
"gift to the community and patients." The new data she says saddens
her. "It's a tough blow to the community, whether you believe XMRV is
the thing or not," she says. "A lot of people in our community really
thought this was it."
Silverman, like many other advocates, hopes that the silver lining in
the XMRV saga is that it draws more researchers to the field. "I do
believe there are viruses involved with the disease," says Silverman.
"I don't have the real answer, but I just hope science continues to
look and figure it out."
Many people with CFS also are looking forward to one more study now
underway that is looking for XMRV and related viruses in 150 patients
with the disease. Results from that study, led by Ian Lipkin of
Columbia University, are expected early next year.
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