onic-fatigue-syndrome/
Applying Venture Philanthropy to Chronic Fatigue Syndrome
September 15, 2011, 8:45 AM ET
By Amy Dockser Marcus
Venture philanthropy =97 the model used to accelerate research and drug
development in diseases such as multiple myeloma and cystic fibrosis =97
is now being applied to a new arena: chronic fatigue syndrome.
Scott A. Carlson, executive director of the newly launched Chronic
Fatigue Initiative, tells the Health Blog the Hutchins Family
Foundation is providing =93over $10 million=94 in funding for projects
through 2014, with the possibility of more depending on the findings.
The initiative wants to fund projects that hunt for the causes of the
illness, the creation of a central bio-bank for blood and other
biological specimens and the development of a cohort of 200 patients
and 200 healthy controls for studies.
The concept that large sums of private money can be used to drive
specific scientific projects in an overlooked disease has proven
successful in the past. The Cystic Fibrosis Foundation, the Multiple
Myeloma Research Foundation and the Myelin Repair Foundation are all
high-profile examples that have used venture philanthropy to
jump-start research projects and drug development in diseases that
previously languished because they were less common and therefore
didn=92t attract pharmaceutical company or academic research interest.
Chronic fatigue syndrome affects more than a million Americans
according to CDC estimates, but has had trouble attracting significant
funding from either government or private resources. The cause is not
known and there is no diagnostic test; diagnosis is usually made by
excluding other conditions. There is often a social stigma too, says
Carlson, since CFS is still =93a disease that hadn=92t been considered a
disease in many places,=94 he says.
The first group of funded projects includes the enrollment of 200 CFS
patients at different sites around the country. Researchers will use
=93very specific criteria to ensure we have representation of many of
the aspects of CFS that may increase chances of finding a pathogen if
it is still present in blood samples or other samples we will be
acquiring,=92=92 says Mady Hornig of Columbia University, who is a
co-director of the pathogen discovery piece.
In addition to blood, the researchers are collecting patients=92 saliva,
tears, urine =97 even a rectal swab. =93You are trying to get a sense of
what is different about them,=94 says Nancy Klimas of the University of
Miami, who is in charge of the cohort recruitment project.
Samples will be stored in a central bio-bank, along with material from
matched healthy controls, who are being recruited with help from the
Red Cross.
Another funded project involves a large epidemiological study using
data from over 250,000 people who are part of three long-running
Harvard School of Public Health studies, including two groups of
female nurses who have been providing information and health data for
decades.
Alberto Ascherio, a Harvard professor who is leading this project,
says researchers will try to identify people who have chronic fatigue
syndrome and then study biological samples in addition to lifestyle,
environmental, and other information to get a better estimate on the
prevalence of the disease and its risk factors.
The new venture philanthropy approach comes at a time when the most
promising recent lead, a possible link between CFS and the retrovirus
XMRV, has come under serious fire. The editors of Science, where the
2009 finding was published, have asked the authors to retract their
paper because of concerns about the validity of the findings. The
authors have refused.
Ironically, one of the key players in the new venture philanthropy
effort has a lead role in the effort to determine if XMRV is linked to
CFS. Virus hunter Ian Lipkin of Columbia, who is co-leading the
pathogen discovery effort as part of the Chronic Fatigue Initiative,
was appointed by NIH to direct a major study to determine whether or
not the XMRV link exists. (Lipkin tells the Health Blog that the NIH
study has not yet started collecting samples from patients and healthy
controls but hopes to get underway soon.)
Some of the same sites participating in the NIH=92s XMRV study will also
help enroll patients in the Chronic Fatigue Initiative=92s bio-bank and
cohort recruitment project. Once samples start coming in to the
bio-bank, Lipkin says they plan to do an initial search for 20-30
infectious agents implicated in the past to be connected to CFS,
including the herpes and Epstein-Barr viruses.
XMRV won=92t be one of them, Lipkin says. =93This should not be taken as
bias one way or another,=94 he adds. =93Given we are already doing that in
another context, it doesn=92t make sense to invest twice.=94
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