Applying Venture Philanthropy to CFS

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http://on.wsj.com/ohqxsl

THE WALL STREET JOURNAL

Health Blog

SEPTEMBER 15, 2011

Applying Venture Philanthropy

to Chronic Fatigue Syndrome

By Amy Dockser Marcus

Venture philanthropy - the model used to accelerate

research and drug development in diseases such as

multiple myeloma and cystic fibrosis

(http://on.wsj.com/n7Bzlz) - is now being applied to

a new arena: chronic fatigue syndrome.

A. Carlson, executive director of the newly

launched Chronic Fatigue Initiative, tells the Health

Blog the Hutchins Family Foundation is providing

*over $10 million* in funding for projects through

2014, with the possibility of more depending on the

findings.

he 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’t 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 *a disease that hadn’t been considered a

disease in many places,* he says.

The first group of funded projects includes the

enrollment of 200 CFS patients at different sites

around the country. Researchers will use *very

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,’’ 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’ saliva, tears, urine — even a rectal swab.

*You are trying to get a sense of what is different

about them,* says 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

(http://on.wsj.com/ohB1c6) 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

(http://on.wsj.com/bg8cn1) 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’s

XMRV study will also help enroll patients in the

Chronic Fatigue Initiative’s 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’t be one of them, Lipkin says. *This

should not be taken as bias one way or another,*

he adds. *Given we are already doing that in another

context, it doesn’t make sense to invest twice.*