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In this Issue
June 2007
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


  • From the Desk of Kim McCleary
  • Research Matters
      Studies Explore Childhood Fatigue
      Science of Pain Featured in Newsweek
  • Pediatric CFS Case Definition Published
  • CFS Advisory Committee Report
  • Virtual Lobby Day Sets Record
  • Media Highlights
      CFS on the Airwaves
      American College of Physicians Covers CFS
      Public Awareness Ad in People Magazine
  • Spring Chronicle on Its Way!
  • Photo Exhibit in Boston and New York City
  • What's Your Perspective?
  • Leave a Legacy
  • Personal Stories: The Heart of Advocacy

From the Desk of Kim McCleary
The largest Lobby Day to date took place May 14 and 15, proving to be a powerful experience for all involved. CFIDS Association president and CEO Kimberly McCleary provides a rundown of events and results so far.
See http://www.cfids.org/cfidslink/2007/060701.asp

Research Matters

    Studies Explore Childhood Fatigue
    We know that CFS strikes young people, but relatively little is known about the prevalence and effects of pediatric CFS. Several research teams tackled the topic of pediatric fatigue and CFS in studies published in the Journal of Chronic Fatigue Syndrome (Volume 13, Numbers 2/3). Here are some highlights.
    See http://www.cfids.org/cfidslink/2007/060702.asp

    Science of Pain Featured in Newsweek
    The June issue of Newsweek features a story titled "The Changing Science of Pain" that quotes a host of pain management authorities and researchers including the American Pain Foundation's Executive Director, Will Rowe. The story addresses new understandings about the biology of pain and the latest wave of pain medications and techniques. Read the full story at http://www.msnbc.msn.com/id/18881802/site/newsweek/

Pediatric CFS Case Definition Published
A milestone in recognizing and treating pediatric CFS was reached earlier this year when a pediatric-specific case definition for the illness was published by a team of experts formed by the International Association of CFS/ME (IACFS/ME). Here are the details.
See http://www.cfids.org/cfidslink/2007/060704.asp

CFS Advisory Committee Report
The Department of Health and Human Services' CFS Advisory Committee (CFSAC) met on May 16 and 17 to hear remarks and get progress reports from federal agencies regarding CFS policy and services. Here are details from the two-day session.
See http://www.cfids.org/advocacy/2007/gac_052507.asp

Virtual Lobby Day Sets Record
Before the first Lobby Day participant set foot in Senate or House offices this year, online CFS advocates were already making our needs known. As online activism grows, Virtual Lobby Day sets new records in participation and results.
See http://www.cfids.org/cfidslink/2007/060705.asp

Media Highlights

    CFS on the Airwaves
    CFS awareness took to the airwaves again last month in a couple of high profile broadcasts! Healthy Living, a 30-minute show on Voice of America TV, devoted nearly half of their May 22 show to a discussion of CFS. Host Linord Moudou interviewed Association president and CEO Kimberly McCleary and Washington, D.C., internist Dr. Alan Pocinki for the show that airs internationally. Meanwhile, the cable channel Retirement Living produced an episode of Healthline that aired May 21 and featured Association Board member Terry Hedrick, Dr. Alan Pocinki and Dr. Fred Friedberg. A panel discussion included Eleanor Hanna of the National Institutes of Health (NIH) and Dr. Giovanni of the Fibromyalgia and Fatigue Centers. The CFIDS Association's website was displayed prominently throughout the program. For other CFS media coverage, see http://www.cfids.org/sparkcfs/media-coverage.asp

    American College of Physicians Covers CFS
    An extensive article titled "Putting Chronic Fatigue Syndrome's Myths to Bed" appeared in the May issue of the ACP Observer, a publication of the American College of Physicians. The author interviews CFS authorities including Dr. Lucinda Bateman, Dr. Anthony Komaroff, Dr. Nancy Klimas and the CDC’s Dr. Suzanne Vernon. The article, targeted toward doctors of internal medicine, addresses diagnosis, treatment and the mounting research showing a biologic basis for the illness. The full text is available at http://www.acponline.org/journals/news/may07/fatigue.htm

    Public Awareness Ad in People Magazine
    The July 2 issue of People features the print ad for the CFS public awareness campaign. This issue is on newsstands June 22. The full-page color print ad depicting the impact of CFS and educating people about the symptoms of the illness began appearing in national magazines in the summer of 2006. It will continue to appear in selected magazines throughout 2007. Look for more details about the ad at http://www.cfids.org/sparkcfs/print.asp
    Spring Chronicle on Its Way!
    The spring issues of the CFIDS Chronicle and the CFS Research Review were mailed to Association members on May 30. The Chronicle cover story is "People Make CFS History"; it profiles six individuals who have made personal efforts to conquer CFS. The spring issue also includes a story about sleep and CFS, a look at assistive devices for the home that can help you conserve energy, and a feature on post-infective studies of CFS that offer new insights. The Research Review, also sent to health care professionals twice yearly, provides clinical "pearls" and first-hand reports from providers who care for CFS patients. If you're not a member, join today to start receiving Association publications like these.     See http://www.cfids.org/ecommerce/membership.asp

Photo Exhibit in Boston and New York City
The traveling photo exhibit, "The Faces of Chronic Fatigue Syndrome," will be in Boston, Massachusetts, at the Boston Public Library from July 16-23. Then it will move to Penn Station in New York City from August 6-13. Please visit http://www.cfids.org/sparkcfs/photo.asp frequently to see where the photo exhibit will travel in the months ahead and to stay abreast of media coverage surrounding these events.

What's Your Perspective?
This year marks 20 years since the CFIDS Association of America was founded. It also marks 20 years in the fight against CFS for the entire CFS community. As we reflect on our shared history and commitment to eradicating this illness, we'd like your perspective on the most important individuals, organizations, moments in time, research findings and achievements of the past 20 years. Please take a few minutes to fill out this short survey and e-mail it back to us.
See http://www.cfids.org/cfidslink/2007/060703.asp

Leave a Legacy
Remembering charitable organizations in your estate plans is a great way to continue to support the causes in which you believe. Planned giving is not for everyone, but it can be an important source of income to nonprofit organizations such as ours. If you participate in charitable giving, maybe it's time for you to consider how your assets will be distributed at the time of your death.

The key document you need is a will. With a will, you can control how your assets are distributed, save taxes, donate to nonprofit organizations you care about and still provide for your family. Gifts of stock, life insurance policies, IRAs, annuities, real estate and other appreciated assets are just some of the ways you can contribute to your favorite charities.

The CFIDS Association of America does not provide legal or financial advice. However, we urge you to consult your attorney, financial planner or accountant regarding the specific tax and financial implications of your charitable gifts.

Personal Stories: The Heart of Advocacy
After just three months on the job, Association staffer Sara Collins found herself in Washington, D.C. watching patients, family and doctors urge Congress to increase federal attention to CFS. The experience taught her something about herself, this country and the many CFS advocates who bravely push for change.
See http://www.cfids.org/cfidslink/2007/060707.asp