Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 IN THIS ISSUE FROM THE CEO'S DESK RESEARCH FIRST POLICY MATTERS YOU MATTER NEWS & EVENTS Quick Links ABOUT USLINK ARCHIVEDONATE NOW 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... 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... Dr. 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...The research associating XMRV with CFS took two unexpected twists this week. Dr. Judy Mikovits, lead researcher, was let go by the Whittemore Institute and Science magazine is conducting an investigation of a figure in the original 2009 paper that may have been misrepresented. Read more... 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...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... (top 4 listings) Research news is regularly updated on our Research1st website. Listings and descriptions of recent journal highlights, current research initiatives and media coverage complement blog posts that address a variety of topics. Subscribe to email alerts about new posts to the site. Back to top 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 made available provided access to its large data set from the Wichita clinical study of CFS. Read more...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...A California high school student with CFS won a large settlement for a case brought under the Individuals with Disabilities Education Act. Read more...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)... Back to top YOU MATTER The high-profile split at the Whittemore 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...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... Back to top NEWS & EVENTS The documentary, "Voices from the Shadows," portraying the stark reality of young people affected by ME/CFS, will be shown at the Mill Valley Film Festival, from Oct. 6-16. They will also host a panel discussion featuring Dr. Montoya of Stanford Univ. and 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," on Oct. 13-14, 2011. The NJ CFS Association's fall conference "New Horizons in Public Health, Treatment & Diagnostics in CFS," 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, was mailed to donors and supporters two weeks ago. To receive a complimentary copy, please send your name and mailing address to cfids@... with "SOLVECFS" in the subject line. Back to top Our Mission: For CFS to be widely understood, diagnosable, curable and preventable. Our Strategy: To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. 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