October 7, 2011
FROM THE CEO'S DESK
RESEARCH FIRST
POLICY MATTERS
YOU MATTER
NEWS & EVENTS
FROM THE CEO'S DESK
The CFIDS Association's research program is paying big dividends. For
every $1 we invested in our 2009-2010 grantees, our grantees have
secured $7 in new funding. Read more at
http://www.research1st.com/2011/10/07/roi/.
RESEARCH FIRST
Dr. Kathleen Light and her team at University of Utah have secured a $1
million grant from the National Institutes of Health to continue their
CFS biomarker studies, funded in 2009-2010 by the CFIDS Association.
Read more at http://www.research1st.com/2011/09/19/light-nih/.
Dr. Benjamin Natelson has cared for patients and studied CFS for more
than two decades. He will examine neurological abnormalities in an
NIH-funded collaboration with Dr. Dikoma Shungu's group, whose work
started with an Association grant. Read more at
http://www.research1st.com/2011/10/07/brainiacs/.
The research associating XMRV with CFS took two unexpected twists this
week. Dr. Judy Mikovits, lead researcher, was let go by the Whittemore
Peterson Institute and Science magazine is conducting an investigation
of a figure in the original 2009 paper that may have been
misrepresented. Read more at
http://www.research1st.com/2011/10/05/new-twists-in-the-xmrv-story/.
On Oct. 14 at 4 p.m. (Eastern), leaders of the Blood XMRV Scientific
Research Working Group will present a free webinar to discuss the phase
III findings published in Science. Read more at
http://www.research1st.com/2011/10/02/webinar-info/.
Problems with the autonomic nervous system have been studied in CFS
since 1994. Two recent papers (Okamoto et al. and Ocon et al., both in
Clinical Science) provide new insights. Two review articles summarize
studies on the neuroendocrine abnormalities (Papadopoulos and Cleare,
Nature Reviews Endocrinology) and the role of infection and neurologic
dysfunction in CFS (Komaroff and Cho, Seminars in Neurology). Read more
at http://www.research1st.com/promising-cfs-research-findings/ (top 4
listings).=20
Research news is regularly updated on our Research1st website. Listings
and descriptions of recent journal highlights
(http://www.research1st.com/promising-cfs-research-findings), current
research initiatives (http://www.research1st.com/current-cfs-research/)
and media coverage
(http://www.research1st.com/media-coverage-about-cfs-research/)
complement blog posts that address a variety of topics. Subscribe to
email alerts
(http://feedburner.google.com/fb/a/mailverify?uri=3DResearch1st&loc=3Den_=
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about new posts to the site.
POLICY MATTERS
The CFIDS Association supports data-sharing as a means to rapidly expand
research on CFS. The CDC's CFS research group has recently provided
access to its large data set from the Wichita clinical study of CFS.
Read more at http://www.research1st.com/2011/10/07/cdc-data-set/.
The federal CFS Advisory Committee will meet next on Nov. 8-9, 2011, in
Washington, D.C. to hear updates from federal agencies, subcommittee
reports and testimony from the public. Read more at
http://www.research1st.com/2011/10/05/cfsac/.
A California high school student with CFS won a large settlement for a
case brought under the Individuals with Disabilities Education Act. Read
more at
http://sanjuancapistrano.patch.com/articles/capo-settles-special-educati
on-suit-for-130000.
The coding system used by insurers and other institutions to track
CFS-related claims was addressed by the ICD-9-CM Coordination and
Maintenance Committee on Sept. 14 at a public meeting in Baltimore. The
Coalition 4 ME/CFS submitted a proposal to move the CFS code to a
category under "Diseases of the Nervous System." The National Center for
Health Statistics has proposed an alternate listing as well. The public
can submit comment on both proposals until Nov. 18. Read more (from the
Coalition) at http://coalition4mecfs.org/ICDFAQ.html.
YOU MATTER
The high-profile split at the Whittemore Peterson Institute and the
investigation by Science of figures used in the 2009 paper is deeply
concerning. While this story and the related controversy may dominate
news in the community for the next while, regardless of the outcome
there are many promising research studies under way that warrant
continued support and merit hope for better ways to diagnose and treat
CFS. The CFIDS Association is committed to translating the heightened
attention and deeper engagement XMRV has attracted into sustainable
progress to solve CFS. Read more at
http://www.research1st.com/2011/10/05/new-twists-in-the-xmrv-story/.
Toni Bernhard, JD, a person with CFS and author of the acclaimed book,
How To Be Sick, writes a blog about chronic illness for Psychology
Today. In a recent post she described the challenges of living with an
invisible illness. Read more at
http://www.psychologytoday.com/blog/turning-straw-gold/201109/the-challe
nges-living-invisible-pain-or-illness.
NEWS & EVENTS
The documentary, "Voices from the Shadows," (http://vimeo.com/24683179)
portraying the stark reality of young people affected by ME/CFS, will be
shown at the Mill Valley Film Festival (http://www.mvff.com/), from Oct.
6-16. They will also host a panel discussion featuring Dr. Jose Montoya
of Stanford Univ. and David Tuller of the New York Times. People in
North America can watch it online, free of charge, through a special
arrangement with Mill Valley Film Festival in co-operation with MUBI.
Stream it at http://mubi.com/festivals/mill-valley; until October 30th.
The producers caution that the film is not suitable for children and
that its stark reality can be difficult to watch.
The Texas A&M Health Science Center will present a symposium,
"Post-Infectious Syndromes Affecting the Nervous System,"
(http://medicine.tamhsc.edu/research/centers/ccdd/upcoming-events.html)
on Oct. 13-14, 2011.
The NJ CFS Association's fall conference "New Horizons in Public Health,
Treatment & Diagnostics in CFS,"
(http://www.njcfsa.org/wp-content/uploads/2011/08/NJCFS-CONF2011-Flyer.p
df) will be held Oct. 16, 2011 in Eatontown, NJ.
The summer-fall 2011 issue of our print publication, SolveCFS: The
Chronicle of the CFIDS Association of America, mailed to donors and
supporters two weeks ago. To receive a complimentary copy, please send
your name and mailing address to cfids@cfids.org with "SOLVECFS" in the
subject line.
*******************************
The CFIDS Association of America
working to make CFS widely understood, diagnosable, curable and
preventable
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