to-chronic.html
Family Puts $10 Million Into Chronic Fatigue Research
by Jocelyn Kaiser on 19 September 2011, 5:14 PM
A family charity is hoping to jump-start the search for a cause for
the mysterious disease known as chronic fatigue syndrome (CFS) by
funding around $10 million in studies by top research groups.
Patients with CFS suffer from long-term fatigue and other symptoms
such as cognitive difficulty and muscle pain; the cause is unknown.
The New York City-based Chronic Fatigue Initiative (CFI), funded by
the private Hutchins Family Foundation, last Thursday announced a
search for causes and treatments. The initiative plans to spend
"within the ballpark" of $10 million over 3 to 4 years, says CFI
Executive Director Scott Carlson. That's around 50% of the $6 million
a year that the National Institutes of Health (NIH) spends on CFS.
A CFI-funded epidemiology study already underway will draw on the
famous Nurses' Health Study and two other studies of health
professionals followed for 20 to 30 years by the Harvard School of
Public Health. Researchers will identify participants in those studies
with CFS and search records of their environmental exposures and
archived blood samples for disease risk factors. Another CFI program
will fund grants exploring possible CFS mechanisms based on hypotheses
to be determined by scientific advisors.
The initiative will also launch a new cohort study of 200 patients and
200 controls recruited from centers around the country. Biological
samples from volunteers will be stored at Duke University and linked
to a clinical database at Harvard. As part of this study, Columbia
University virus hunter Ian Lipkin and others will search the samples
for at least 20 viruses and other pathogens in hopes of finding one
linked to CFS.
Carlson says the Hutchins family was interested in CFS research
because it's "orphaned" compared with diseases like Parkinson's,
which, like CFS, affects an estimated 1 million Americans. The family
has several friends with the disease, he said.
Several features make the initiative different from previous CFS
studies, Carlson says=97the technology Lipkin will use, the size and
careful characterization of the cohort, the investigators involved,
and the business-driven approach. "I don't think anybody's ever taken
as comprehensive an approach," he says. If the studies yield promising
results, the family hopes that larger foundations will kick in more
funding.
One pathogen that the study will not test for is a mouse retrovirus
known as XMRV. Two years ago, a report in Science suggested such a
link between CFS and XMRV, but other groups have been unable to find
the virus in CFS patients. Lipkin is leading a large NIH-funded study
of the putative CFS-XMRV link. But that work and the CFI studies "are
not related in any way" Carlson says. After talking to experts, he
says, "the consensus seems to be that the XMRV issue will be covered
completely."
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