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In this Issue
January 2008
CFIDSLink Electronic Newsletter  

CFIDSLink is e-mailed monthly free of charge to all those interested. To sign up for the electronic newsletter visit http://www.cfids.org/subscribe.asp.

In this Issue

  • From the Desk of Kim McCleary
  • Research Matters
        CFS Gene Study Targets Serotonin Function
        University Recruiting for Clinical Trial of Xyrem
  • CFS News from Capitol Hill
  • Public Awareness Campaign Travels into 2008
  • Credibility & Convergence: A Look at CFS
  • Provider Education Contract with CDC Comes to a Close
  • Sustenance and Convenience: The Chairman’s Circle
  • “Defining Moments” Essay Series: Ruth Sloven

From the Desk of Kim McCleary
Eight in 2008
What’s new in the new year? Lots. President & CEO Kim McCleary shares eight updates for 2008, the Association’s 21st year of service to the CFS community.
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Research Matters

    CFS Gene Study Targets Seratonin Function
    A recent study of genetic factors in CFS found sequence variations in genes related to the synthesis, signaling and transport of serotonin, a neurotransmitter important in the function of the central nervous system.
    Get the full story>>

    University Recruiting for Clinical Trial of Xyrem
    The University of Medicine and Dentistry of New Jersey, in cooperation with Jazz Pharmaceuticals, is recruiting people with CFS for a study of the effects of the sleep medication Xyrem. Volunteers for the study will complete questionnaires about symptoms as well as a computerized test to assess brain fog. They will then be randomly assigned to receive either the sleep drug or a placebo. Results will be monitored weekly to determine Xyrem’s ability to improve sleep function in people with CFS. Details about the study appear on ClinicalTrials.gov.

CFS News from Capitol Hill
While Congress wrestled with funding for health agencies and the rest of the federal budget, the CFS Advisory Committee met and made an important recommendation for the CDC’s CFS program. Here’s a recap of recent events and some news about what’s in store for 2008.
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Public Awareness Campaign Travels into 2008
The national CFS public awareness campaign will continue to educate and motivate people throughout the new year, starting January 14–21 in Philadelphia, Pennsylvania, where “The Faces of Chronic Fatigue Syndrome” photo exhibit will be on display at 30th Street Station—a venue that serves 25,000 commuters daily. If you’re in the area, don’t miss this chance to see the exhibit in person. For the rest of you, look for a feature in the winter CFIDS Chronicle, telling the story of the impact this exhibit is making in its travels across the country (including a peek at all ten images). For more information about awareness campaign activities in 2008, see the www.cfids.org/sparkCFS

Note: The photo exhibit’s presence in Philadelphia has generated interest from regional print and broadcast media. If you’re in the Philadelphia area, keep your eyes open for CFS stories over the next two weeks and let your local news source know that you appreciate the coverage they give this illness.

Credibility & Convergence: A Look at CFS
Emerging illnesses don’t just spring forth as public health priorities. There are recognized models for how they gain attention and credibility. This article by Kim McCleary from the fall 2007 CFIDS Chronicle, offers a fascinating look at the factors that contribute to recognition and how CFS has fared so far.
Get the full story>> [in PDF format]

Provider Education Contract Comes to a Close
The CFIDS Association withdrew from the process of applying for a renewal of its contract with the Centers for Disease Control and Prevention's (CDC) CFS research group for services related to the education of health care professionals about the diagnosis and management of CFS. This decision was based on concerns about the direction of the program—specifically the lack of clinical information being communicated by CDC speakers and increasingly unfavorable contractual requirements being imposed by the CDC. Requirements of the five-year contract that ended on December 31, 2007, will be completed over the next several weeks. The online continuing education courses for health care professionals have been transferred to www.cdc.gov/cfs/cme. The CDC reports that it intends to continue provider education activities through its internal staff. The public awareness campaign conducted as a contract to the CDC’s National Center for Health Marketing will continue uninterrupted.

Independent of CDC funding, the CFIDS Association will continue to offer provider education activities, honoring the Association's strong commitment to advancing the medical community’s knowledge and understanding of CFS.

Sustenance and Convenience: The Chairman’s Circle
Many Association donors choose to make ongoing monthly gifts through automatic bank drafts or electronic funds transfers. We call them the Chairman’s Circle, and membership does have its advantages.
Get the full story >>

Personal Stories: A “Defining Moments” Essay by Ruth Sloven
Ruth Sloven, author of "The Mother Ring," shares a recent moment in her life that marked a familial breakthrough in her 25-year journey with CFS.
Get the full story>>