September 13, 2011
FROM THE CEO'S DESK
NEWS & EVENTS
FROM THE CEO'S DESK
A high-profile study of a promising new approach to treating leukemia
reminded many of us of a similar study of CFS from 10 years ago. Read
more at http://www.research1st.com/2011/08/12/leukemia-therapy/.
XMRV and its reported association with CFS has been the subject of 17
published studies, 15 of which have not found evidence of a link. "The X
Factor," to be published in the summer-fall issue of SolveCFS (now at
press), summarizes the two-year effort to square conflicting data. Read
more at http://www.research1st.com/2011/09/13/the-x-factor/.
Two important publications about XMRV were issued in early September. A
special issue of Advances in Virology and a technical assessment from
the European Centre for Disease Control add to the growing literature
about XMRV. Read more at
Three years after infection with Giardia lamblia, a common intestinal
parasite, 46.1% of a large study population in Norway reported
persistent chronic fatigue. Although it's not possible from this study
to assess how many met CFS criteria, this study adds data on triggers of
post-infectious illness. Read more at
Benjamin Natelson, MD, describes his team's next steps to follow up
exciting results from a spinal fluid marker study published early this
year in, "CFS: Is It All In the Brain?" Read more at
Alan Light, PhD, Charles Vierck, PhD, and Kathleen Light, PhD, have
authored a book chapter titled, "Translation from Mouse Sensory Neurons
to Fibromyalgia and CFS" in the text, "Translational Pain Medicine: From
Mouse to Man." Read more at http://1.usa.gov/r3BpY6.
The National Institute of Health has posted its report of the ME/CFS
State of the Knowledge Workshop held April 7-8, 2011. Read more at
Research news is regularly updated on our Research1st website. Listings
and descriptions of recent journal highlights
research initiatives (http://www.research1st.com/current-cfs-research/)
and media coverage
complement blog posts that address a variety of topics. Subscribe to
about new posts to the site.
Our scientific director, Suzanne D. Vernon, PhD, was in Stockholm last
month for a symposium for the Ministry of Health with other CFS experts.
Her presentation and media coverage are recapped in "Today in
Stockholm." Read more at
The coding used by insurers and other institutions to track CFS-related
claims will be addressed by the ICD-9-CM Coordination and Maintenance
Committee on Sept. 14 at a meeting in Baltimore. Read more (from the
Coalition 4 ME/CFS) at http://coalition4mecfs.org/ICDFAQ.html.
The CFIDS Association nominated four highly qualified individuals to
serve on the federal CFS Advisory Committee. Read more at
Dr. Vivian Pinn, who directed the National Institute of Health's Office
of Research on Women's Health (ORWH) for two decades, retired last
month. CFS research at the NIH is coordinated through the ORWH. A
national search is being conducted for a successor. Read more at
Lucinda Bateman, MD, addresses the huge information gap that separates
people with ME/CFS from their primary care and specialty providers. Read
NEWS & EVENTS
Through a new collaboration with patientINFORM, the CFIDS Association
will be able to share links to full-text versions of many medical
articles with Research1st.com readers. Read more at
National Public Radio covered CFS in two Labor Day reports, with mixed
results. Joanne Silberner (http://n.pr/psowS6) reported on current
research and the experience of CFS, while Patti Neighmond
(http://n.pr/qbfYzI) focused on the controversial PACE study of
behavioral therapies. HealthNewsReview (http://ht.ly/6oYCY) gave
Neighmond's story 3 stars out of 10.
The IACFS/ME will host the 10th International CFS/ME Research and
Clinical Conference in Ottawa, Canada, Sept. 22-25, 2011. The conference
theme is "Translating Evidence Into Practice." (http://www.iacfsme.org/)
BioMed Central and Retrovirology's second biennial "Frontiers of
Retrovirology" (http://www.frontiers-of-retrovirology.com/) conference
will be held in Amsterdam, Oct. 3-5, 2011.
The documentary, "Voices from the Shadows," (http://vimeo.com/24683179)
portraying the stark reality of young people affected by ME/CFS, will be
shown on Oct. 8 (http://mvff2011.inticketing.com/films/166223) at the
Mill Valley Film Festival, held Oct. 6-16. A full schedule of films and
related events is posted here http://www.mvff.com/.
The Texas A&M Health Science Center will present a symposium,
"Post-Infectious Syndromes Affecting the Nervous System,"
on Oct. 13-14, 2011.
The NJ CFS Association's fall conference "New Horizons in Public Health,
Treatment & Diagnostics in CFS,"
df) will be held Oct. 16, 2011 in Eatontown, NJ.
Laura Hillenbrand's "Unbroken" is a finalist for the prestigious 2011
Dayton Literary Peace Price. Congratulations, Laura! Read more at
The summer-fall 2011 issue of our print publication, SolveCFS: The
Chronicle of the CFIDS Association of America, is at press and will be
mailed to donors and supporters next week. To receive a complimentary
copy, please send your name and mailing address to firstname.lastname@example.org with
"SOLVECFS" in the subject line.
The CFIDS Association of America
working to make CFS widely understood, diagnosable, curable and