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In this Issue

April 2008
CFIDSLink Electronic Newsletter 

CFIDSLink is e-mailed montly 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
        The Research/Advocacy Connection
        Etiology, Exercise and CFS
        Scientific Director on the Job, on the Road
        TMJ Meeting Looks at CFS and Other Illnesses
        Etiology, Exercise and CFS
  • CFS News from Capitol Hill
        Meetings and a Congressional Briefing on CFS
        CFS Advisory Committee to Meet May 5-6
  • Treatment Print-and-Go: A Clinical Wisdom
  • Taking the Caregiver into Account
  • Association Givers Have Their Say
  • Documenting the CFS Community
  • Personal Stories: A “Defining Moments” Essay by Floyd Skloot

From the Desk of Kim McCleary
When Clutter Means Progress
At a time when many people turn their thoughts to spring cleaning, Association president & CEO Kim McCleary compares the state of her desk to the state of activities happening on the CFS front this spring.
Get the full story >>

Research Matters

The Research/Advocacy Connection
When it comes to CFS research, the government and health care agencies have tremendous influence over funding and priorities. That’s why advocacy is often one of strongest tools in the push to increase and improve CFS research nationally. Learn how the Association, in particular, has used advocacy to leverage research dollars and sense.
Get the full story >>

Etiology, Exercise and CFS
A recent study published in Psychosomatic Medicine examined 34 CFS patients from a large study of lifelong health and development (a birth cohort) and found that CFS was not associated with lower levels of activity and exercise throughout childhood. Scientific director Dr. Suzanne Vernon, PhD, looks at the possible implications and shares her take on the subject.
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Scientific Director on the Job, on the Road
Monitoring research advances, initiating dialogue between CFS investigators and otherwise helping to connect the dots and accelerate progress in CFS research can keep you on the move. Here’s a quick rundown of scientific director Suzanne Vernon’s activities on the road in March and where she’s heading next.
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TMJ Meeting Looks at CFS and Other Illnesses
The fifth scientific meeting of the TMJ Association will focus on conditions that often occur in concert with temporomandibular joint and muscle disorders, including CFS, fibromyalgia and other illnesses. The goal of the meeting is to discover if there are common roots and physiological pathways among these conditions and to stimulate cross-collaborative studies. Suzanne Vernon, PhD, will speak about CFS at the meeting. Patients, clinicians and researchers are invited to attend. For more information visit www.tmj.org/2008sciencemtg.asp.

CFS on Capitol Hill

Meetings and a Congressional Briefing on CFS
Last month Association president & CEO Kim McCleary and scientific director Suzanne Vernon, PhD, met with more than 20 Congress members and staffers about accountability and health spending in the federal budget. On May 8, Senator Tom Harkin (D-IA) will sponsor a congressional briefing on CFS, and the Association has assembled a compelling set of speakers.
Get the full story >> 

CFS Advisory Committee to Meet May 5-6
The Chronic Fatigue Syndrome Advisory Committee provides advice and recommendations to the Secretary of Health and Human Services on issues related to CFS. The next CFSAC meeting is scheduled to be held on May 5-6, 2008, in the Hubert H. Humphrey Building, Room 800. The agenda for the meeting is being developed and will be posted on the CFSAC website when completed. More information from GAC archive.

Treatment Print-and-Go: Clinical Wisdom
Respected CFS physician Lucinda Bateman, MD, shares a valuable treatment tip for medical professionals treating someone with CFS. This clinical "pearl of wisdom" is provided in a format you can print and take with you on your next medical visit.
Get the full story (in PDF format)>> 

For Bateman’s top treatment advice for medical professionals, check out the upcoming issue of the CFIDS Chronicle, mailing in May. Subscribe now.

Taking the Caregiver into Account
Providing care for someone with a chronic illness requires compassion and stamina—resources that don’t come in unlimited supply. If you’re caring for someone with CFS, here are some tips for investing in your own well-being.
Get the full story (in PDF format) >> 

Association Givers Have Their Say
Philanthropy all comes down to the people who give and the work that’s achieved through those gifts. Why do these gifts matter to the Association and to the people who make them? Director of development Emily Hedrick shares some thoughts from the givers themselves.
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Documenting the CFS Community
Defining Moments: 20 Years of Making CFS History is the first publication to document the strength and history of the CFS community. Association members and donors were the first to get this 61-page special issue, full of historic moments, stories and images. Now you can, too! Click here to order a copy for yourself, family or friends (or call the Resource Line at 704-365-2343). Copies are $15 each or two for $20. You can also couple this issue with the 2005/2006 special edition The Science and Research of CFS for just $20 for the pair. 

Personal Stories: A “Defining Moments”
Essay by Floyd Skloot
Award-winning writer Floyd Skloot—author of 15 books including In the Shadow of Memory and Patient 002—poetically describes how his relationship to CFS shaped his perspective of himself.
Get the full story >>