Chronicle Issues
  Research Review Issues
  CFIDSLink
E-newsletter
  Reprint Policies

In this Issue

June 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
        Webinar Video on the Science of CFS
        Looking for a Breakthrough
        Wichita Study of Cortisol and Interleukin 6
        Animal Study Explores Effect of Herbal Tonic
        Recruitment for Genetic Risk Factors Study
        Conference to Examine Viral Infections in CFS   
  • CFS Activist Gerald Crum Dies
  • The Biology of Sleep
  • Excerpts from the Congressional Briefing on CFS
  • CFS Photo Exhibit Comes to Baltimore
  • Tell Us Your Story
  • Personal Stories: Rochelle Shepherd

From the Desk of Kim McCleary
A Capitol Investment
Association president & CEO Kim McCleary gives her take on the recent congressional briefing on CFS and its effect on Senate and House staff participants.
Get the full story >>

Special Announcement:
The Campaign to Accelerate CFS Research
The field of CFS research is at a pivotal time, with opportunities to accelerate the rate of scientific progress. To take advantage of these opportunities, the CFIDS Association of America has launched the most ambitious independent CFS research initiative in history: The Campaign to Accelerate CFS Research. With the goal of raising $1 million by the end of 2008, this initiative is designed to speed the discovery of biomarkers, better diagnostics and more effective treatments for CFS.
Get the full story >>

Research Matters

Webinar Video on the Science of CFS
On May 28, 2008, CFIDS Association scientific director Suzanne Vernon, PhD, and president & CEO Kim McCleary delivered a live, online presentation on the past, present and future of CFS research. Close to 200 people participated in this free webinar session. Here is a video file of the presentation that you can see and hear for yourself.
Get the full story >>

Looking for a Breakthrough
The scientific investigation of CFS has been under way for more than 20 years. Established facts, new clues and advanced technology are now coming together in promising ways. So what do we know, and where are we headed?
Get the full story (in PDF format) >>

Wichita Study of Cortisol and Interleukin 6
The most recent paper drawn from the CDC’s Wichita population-based study describes finding lower cortisol levels and slightly higher interleukin 6 (IL-6) levels in people with CFS. The differences also appear to correlate with CFS severity.
Get the full story >>

Animal Study Explores Effect of Herbal Tonic
A study published in Neurochemistry Research used an animal model of physical fatigue to examine the effects of the herbal tonic hochu-ekki-to (TJ-41). The study’s methods and results may hold interest for people with CFS.
Get the full story >>

Recruitment for Genetic Risk Factors Study
Brigitte Huber, PhD, of Tufts University and Renee Taylor, PhD, of the University of Illinois at Chicago are seeking research participants ages 13 to 64 for a study of genetic risk factors that may be associated with CFS. To be eligible for the study, subjects should have documentation of a physician’s diagnosis of either CFS or mononucleosis. If interested, contact
Dr. Taylor at rtaylor@uic.edu.

Conference to Examine Viral Infections in CFS
A special symposium at the 6th International Conference on HHV-6 will feature a broad array of presentations on the role of viruses and other agents in CFS. The symposium will be held June 22-23 in Baltimore. Dr. Jose Montoya of Stanford University will release the results of the clinical trial of Valcyte in CFS patients who have documented evidence of HHV-6 and Epstein-Barr virus infection. The meeting is being hosted by the HHV-6 Foundation and the IACFS/ME. The CFIDS Association is a co-sponsor. More information is available at http://www.hhv-6conference.com/satellite/.

CFS Activist Gerald Crum Dies
Longtime CFS activist Gerald (Jerry) Crum died of cancer on June 1, 2008. Diagnosed with CFS in the late 1980s, Crum was a pioneering advocate for research and was among the first patients to participate in the clinical trials of the drug Ampligen. Crum shared a long history with the CFIDS Association. He was a founding member of CFIDS Action Campaign for the United States (CACTUS), the first chairman of the Association’s public policy committee, and his wife, Coco, served on the Association’s Board of Directors from 1993 until 1998. Crum was also an appointee to the Department of Health and Human Services CFS Coordinating Committee, a predecessor to the CFS Advisory Committee. After he was diagnosed with lymphoma in December 1997, he engaged in cancer advocacy in his home state of Nevada and on the national scale. He testified several times before the Nevada legislature to improve access to treatments for CFS and cancer and worked to help pass legislation creating the Whittemore-Peterson Institute now being built in Reno.

The CFIDS Association honors Crum’s tireless efforts to campaign for the rights of people disabled by CFS and cancer. Here is a popular story he wrote for the CFIDS Chronicle in 1989 about his experience with the illness titled “My Dance with the Serpent.”

Special Series: The Biology of Sleep
The CFIDS Chronicle, the Association's print companion to the CFIDSLink, has just begun a yearlong series on "The Biology of Sleep"—exploring how sleep impacts various body systems and what may be happening during sleep dysfunction. Here’s the first installment in the series, explaining the basics of sleep and why it’s so important. Subsequent installments will appear in the next three issues of the CFIDS Chronicle.
Get the full story >>

Excerpts from the Congressional Briefing on CFS
On May 8, 2008, the CFIDS Association and Senator Tom Harkin (D-IA) hosted a congressional briefing on CFS. The event drew congressional staffers to hear CFS experts and NPR's Scott Simon discuss the challenges of CFS. Here are excerpts from the event.
Get the full story >> 

CFS Photo Exhibit Comes to Baltimore
“The Faces of Chronic Fatigue Syndrome” exhibit makes its way to the Maryland Science Center in Baltimore from June 23-29. The Maryland Science Center is a destination for thousands each week. If you’re in the area, don’t miss this chance to see the traveling photo exhibit that’s been raising public awareness about CFS. For more information about the exhibit and future venues visit http://www.cfids.org/sparkcfs/photo.asp.

Tell Us Your Story
We’d like to hear from patients and family members about their experiences dealing with CFS. We’re looking for individuals in the following four categories: 1) teens or adolescents with CFS, 2) African Americans or Hispanics with CFS, 3) CFS patients who are using graded exercise or pacing as part of their treatment regimen, and 4) family members of patients. If you fall into one of those categories, and you’re willing to tell your story, please contact media@cfids.org and tell us a little about your experience so we can follow up with you personally. Your story can help educate Americans and the medical community about this illness, so we hope you’ll share it!  

Personal Stories: Rochelle Shepherd
Rochelle Shepherd has had CFS and fibromyalgia for more than 17 years. She equates the experience to having unwanted houseguests she’d like to evict.
Get the full story >>