A New Foundation Tries to Shed Light on Chronic Fatigue Syndrome
Posted 9/16/2011 8:33:55 PM
---------------------------------------------------------------------------=
-----
Patients with chronic fatigue syndrome may have a reason to celebrate.
Yesterday marked the official launch of the New York City-based
Chronic Fatigue Initiative (CFI), a new research program that brings
together experts in chronic fatigue syndrome (CFS) in an effort to
understand what causes the disorder and how doctors may be able to
treat it.
CFI, which includes experts from Columbia, Harvard, Stanford, Duke,
the University of Miami and the University of Utah, was established
thanks to a multi-million dollar gift from the Hutchins Family
Foundation. The Foundation has a long history of supporting education,
public policy and medical research, according to CFI executive
director Scott Carlson.
=93The Hutchins family identified CFS as a condition for which there
hasn=92t been a comprehensive research effort,=94 said Carlson, who worked
closely with the family to get CFI off the ground.
So far, its cause is unknown, and there is no cure. The goal of
treatment is to improve symptoms, which include muscle pain, weakness,
impaired memory and extreme fatigue. These symptoms can persist for
years, significantly affecting patients=92 quality of life.
CFS affects more than one million Americans =96 more than multiple
sclerosis, lupus and lung and ovarian cancers =96 according to the
Centers for Disease Control and Prevention. But because some doctors
are skeptical of the disorder, patients often feel neglected.
=93CFI is an opportunity to gain some traction in a frequently
stigmatized illness,=94 said Dr. Mady Hornig, who is directing research
focused on biomarkers and pathogen discovery for CFI at the Center for
Infection and Immunity (CII).
Researchers at CII will use molecular assays like MassTag PCR,
microarrays and high-throughput sequencing to look for pathogens in
samples from 200 patients and 200 healthy controls specifically
recruited for this project from five sites across the country.
Patients and controls will be matched by location, time of year, risk
of exposure, age, sex and ethnicity, among other factors, in order to
keep variability to a minimum. They=92ll also be collecting samples from
blood, saliva, tears, urine and other tissues to make sure that the
search for a potential pathogen is as comprehensive as possible.
=93We=92ll screen all these samples for the usual suspects --
cytomegalovirus, herpes viruses, enteroviruses, and viruses implicated
in chronic diseases -- allowing us to determine whether a single agent
or a constellation of agents is involved,=94 said CII Director Dr. Ian
Lipkin.
(They will not be testing for XMRV, as that is already being done in a
separate study organized by the National Institutes of Health and
directed by Lipkin.)
The samples will be housed in a biobank at Duke University, and a
database administered by Harvard Medical School will link them to
clinical data collected from the same cohort of patients.
All this information will be made available for future research projects.
The Initiative is also sponsoring an already-ongoing epidemiology
study led by the Harvard School of Public Health to look for risk
factors that may contribute to the onset of CFS using data collected
over the course of more than 20 years as part of the Nurses and Health
Professionals Studies. These data may help scientists pinpoint risk
factors and how the disease progresses.
By organizing a comprehensive program that bridges basic and clinical
research, CFI is hoping to bring credibility to this illness, along
with better treatments.
=93We are anxious to find out what results come up,=94 said Carlson.
About a million patients in the US probably share that sentiment.
-- Daniela Hernandez
---------------------------------------------
Send posts to CO-CURE@listserv.nodak.edu
Unsubscribe at http://www.co-cure.org/unsub.htm
Co-Cure Archives: http://listserv.nodak.edu/archives/co-cure.html
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
---------------------------------------------
