October 2011
CFIDSLink—e-Newsletter 

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In This Issue

FROM THE CEO'S DESK

RESEARCH FIRST

POLICY MATTERS

YOU MATTER

NEWS & EVENTS

Drs. Oystein Fluge and Olav Mella

FROM THE CEO'S DESK

The results of a study published Oct. 19, 2011, in PLoS ONE, showing that two infusions of a monoclonal antibody called Rituximab may provide durable relief from CFS for at least some patients, are extremely encouraging. We've posted a summary of the study at Research1st. The most exciting news from the study is the possibility of disease-modifying treatment. This study also provides support for other possible approaches to repair immune abnormalities that have been identified in CFS patients. The application of a therapy approved for two types of cancer and rheumatoid arthritis validates the seriousness of the illness and demonstrates the large unmet need for effective treatment. Larger studies are needed, and the drug tested is not without its risks. We will use these promising results to urge new investment from pharma, academic and government research institutions to meet this huge need. We congratulate the team in Bergen, Norway, for pioneering this approach, for the exciting results they have produced and the hope they have generated.

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...

Elene Naeverlid got CFS at age 16. She is one of the responders in the study. (Photo: Spiegel Online)

RITUXIN STUDY LINKS & MEDIA COVERAGE

"Benefit from B-Lymphocyte depletion using the anti-CD20 antibody Rituximab in chronic fatigue syndrome. A double-blind and placebo-controlled study," by Oystein Fluge et al, in PloS ONE (Oct. 19, 2011)

"Rituximab trial shows promise," by Kim McCleary on Research1st.com (Oct. 19, 2011)

"Chronic fatigue syndrome eased by cancer drug," by Andy Coghlan at New Scientist magazine (Oct. 19, 2011)

"Norweigan research breakthrough can solve CFS mystery," TV2 in Norway (English translation) (Oct. 19, 2011)

"Cancer drug can help the chronically exhausted," by Nina Weber at Spiegel Online (English Translation) (Oct. 20, 2011)

RESEARCH FIRST

The burden of disease refers to the burden that ill heaYolth and risk factors place on society. Measures of this burden include prevalence, mortality, life expectancy, economic costs, hospitalization rates as well as specific measures of quality of life and disability. Writer Andrew Kewley of Adelaide, Australia, explores how this measurement might help make the case for deeper investment in CFS research. Read more...

The IACFS/ME held its biennial research conference in Ottawa last month. Dr. Charles Lapp shares his report of conference highlights. Read more...

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. 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...

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...

The CFIDS Association of America hosted a webinar on Oct. 14, 2011 to provide information about the Phase III results of the multicenter study of XMRV known as the Blood XMRV Scientific Research Working Group (SRWG) study. Study leaders described the large study in detail. For links to the recording, slides and lead author Graham Simmons' responses to 10 common criticisms of the study, 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 published recently 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.

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...

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)...

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...

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.. .

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. 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," 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, 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.