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Family puts $10 million into chronic fatigue research
Thursday 22 September 2011
Family Puts $10 Million Into Chronic Fatigue Research
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 [15 September] 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—the 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."
The above, with comments, originally appeared here.
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