In this Issue

July 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
• Special Announcement: The Campaign to Accelerate CFS Research
• Research Matters
      Update on Association's Research Activities
      View from HHV-6 and Virus Meetings
      Comorbid Conditions Receive Focus
      New Findings about Comorbid Conditions
      Pearls of Wisdom from a CFS Physician   
• Advocacy Counts
      Summer Is Prime Time To Be Heard
      Help Secure CFS Advisory Committee Renewal   
• Public Awareness Campaign Results
• From a Mother Whose Children Have CFS
• Personal Stories: Chris Ruhl

From the Desk of Kim McCleary
Two Moving Stories, Two Calls to Action
It's often the stories we hear from individuals and families dealing with CFS that impact us the most. CFIDS Association president & CEO Kim McCleary introduces you to two members of the CFS community who recently shared their stories as a way to sound the call for greater investment in CFS research.
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Research Matters

Update on Association's Research Activities
This year's research grant program is well under way, and so are activities by scientific director Suzanne Vernon, PhD, to spur collaborations and help propel CFS science forward. Here's an overview of what's happening.
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View from HHV-6 and Virus Meetings
Our scientific director recently returned from attending the HHV-6 conference and satellite meeting on viruses in CFS and postviral fatigue. Here's her take on the presentations she heard, including preliminary results from the Valcyte trial.
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Comorbid Conditions Receive Focus
Our scientific director attended a conference exploring conditions—including CFS, fibromyalgia, headache/migraine, interstitial cystitis, vulvodynia, endometriosis, arthritis and functional gastrointestinal disorders—that commonly co-occur with temporomandibular joint disorder (TMJ). Exploration into the characteristics of these disorders could have positive implications for people with CFS.
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New Findings about Comorbid Conditions
A paper published in Psychological Medicine reports on a recent twin study that examined how genetic and environmental factors influence six common comorbid conditions: chronic widespread pain, chronic fatigue, irritable bowel syndrome, recurrent headache, major depression and general anxiety disorder.
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Pearls of Wisdom from a CFS Physician
With proper care, people with CFS can experience improved functionality and quality of life. In the spring issue of the CFIDS Chronicle, Lucinda Bateman, MD, shared five simple truths that have fostered improvement in nearly every CFS patient she treats. Here's a special reprint of that Chronicle story for you to enjoy. In the upcoming issue of the CFIDS Chronicle, treatment will also be on tap, with advice on physical therapy, nutrition and managing orthostatic intolerance.
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Advocacy Counts

Summer Is Prime Time To Be Heard
Many members of Congress are campaigning for re-election and will be more visible in their home communities. The time between August 11 and September 5 is congressional "recess," when members are back in their states and districts to meet with their constituents. Here are ways to use that time to raise their awareness about CFS.
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Help Secure CFS Advisory Committee Renewal
Representatives Jan Schakowsky (D-IL-9) Sue Myrick (R-NC-9) and several others have circulated a letter to their colleagues in the U.S. House of Representatives asking them to help secure renewal of the charter for the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC). The CFSAC is one of very few disease-specific advisory committees that exists to make recommendations to the secretary of health. You can help make sure it continues.
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Public Awareness Campaign Results
The national public awareness campaign continues to generate media coverage of CFS and elevate the illness as a serious public health priority. Here's an update on how many news stories and how much advertising and public exposure for CFS the campaign has generated so far.
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From a Mother Whose Children Have CFS
Pam Nadeau has three children, ages 17, 22 and 24. All three of them have CFS. Learn what that's meant for her family and where she and her husband see hope for the future.
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Personal Stories: Chris Ruhl
Chris Ruhl and his wife, Susan Lucey, have endured a long journey with her CFS. But the process, though difficult, is transforming Chris in ways he's increasingly learning to appreciate.
Get the full story >>