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In this Issue

• From the Desk of Kimberly McCleary
• Research Matters
  FDA Approves Drug for FM
  CFS Research from Japan
• New CFS Prevalence Rates Published
• D.C. Lobby Day Yields Letters to NIH
• CFS History Makers Get Press
• Organizations Making History: A Series
• PSAs Get Major Air Play
• Web Video by Dorothy Wall
• Enthusiastic Crowd at Houston CFS Seminar
• Personal Stories: An Expanding Universe

From the Desk of Kimberly McCleary
The historical focus the Association is bringing to its 20th year of service has got many folks at the CFIDS Association digging through archives and photos of years gone by. President and CEO Kimberly McCleary shares her own experience of the journey down memory lane and invites you along for the ride.

See http://www.cfids.org/cfidslink/2007/070501.asp

Research Matters

FDA Approves Drug for FM
Lyrica (pregabalin) has become the first drug approved by the U.S. Food and Drug Administration (FDA) to treat fibromyalgia (FM). In a statement released June 21, 2007, the FDA affirmed that some fibromylagia patients experience decreased pain after taking Lyrica, though the mechanism by which the drug produces such an effect is unknown.
See http://www.cfids.org/cfidslink/2007/070502.asp

CFS Research from Japan
A group of Japanese researchers recently released a groundbreaking 15 research articles on CFS in the Japanese Journal of Clinical Medicine Nippon Rinsho. Here’s a quick rundown of topics the studies addressed.
See http://www.cfids.org/cfidslink/2007/070503.asp

New CFS Prevalence Rates Published
A study published June 8, 2007, in Population Health Metrics reports evidence that CFS may be a more significant public health problem than previously reported. Researchers at the U.S. Centers for Disease Control & Prevention (CDC) surveyed more than 19,000 residents in Georgia and discovered that 2.54% of the people aged 18-59 met the clinical diagnosis for chronic fatigue syndrome. This is significantly higher than the rates found in earlier studies. The publication has also generated some controversy about survey methods and case definition. Read the CFIDS Association’s press release at http://www.cfids.org/sparkcfs/pr060807.pdf, a statement issued on June 12 at http://www.cfids.org/advocacy/2007/gac_061207.asp and the full text of the research article at http://www.pophealthmetrics.com/content/5/1/5. Watch for an article abou the new Georgia study in the summer 2007 CFIDS Chronicle.   

D.C. Lobby Day Yields Letters to NIH
Volunteer CFS advocates, both online and on Capitol Hill, took D.C. by storm this May, yielding congressional support for CFS in the form of Senate and House letters to National Institutes of Health (NIH) director Dr. Elias Zerhouni.

See http://www.cfids.org/cfidslink/2007/070504.asp

CFS History Makers Get Press
Some well-known and new faces on the CFS scene have been “getting ink” in publications heralding from locations as diverse as Florida, New Jersey and Sacramento. Here are some quick profiles of history makers who’ve gotten press coverage in recent months.

See http://www.cfids.org/cfidslink/2007/070505.asp

Organizations Making History: A Series
In this article, the Association pays tribute to four organizations making unique contributions in the fight against CFS and related disorders. Learn more about how the National Fibromyalgia Association, the Wisconsin CFS Association, the Northern Virginia CFS/FM Support Group and CFS Phoenix are leading progress at the national, state, local and “virtual” levels of our community. This launches a series recognizing the efforts of groups large and small. The series will continue in the CFIDS Chronicle, CFIDSLink and in a special publication due out this fall.

See http://www.cfids.org/cfidslink/2007/070506.asp

PSAs Get Major Air Play
Television and radio public service announcements (PSAs) about chronic fatigue syndrome are airing in many cities throughout the nation. In fact, the television PSA has consistently ranked in the top third out of all the PSAs currently being tracked in the Nielsen rankings. Learn more about how this PSA is reaching the public (and view it for yourself).

See http://www.cfids.org/cfidslink/2007/070507.asp

Web Video by Dorothy Wall
Dorothy Wall’s book, Encounters with the Invisible, has been heralded as an unblinking look at the realities of chronic illness. Now in a video segment she produced with the help of friends, Dorothy talks about writing this book which blends her personal story and the history, science, and politics of CFS and other unexplained illnesses.

You can view the video on You Tube at http://www.youtube.com/watch?v=2D9JfQZwxMs

Enthusiastic Crowd at Houston CFS Seminar
More than 100 people turned out to hear Dr. Morris Papernik and Dr. Christopher Snell share their CFS treatment and research experience at the recent kNOw MORE CFS seminar in Houston, Texas. Here’s a taste of what participants experienced.

See http://www.cfids.org/cfidslink/2007/070509.asp

Personal Stories: An Expanding Universe
Madelyne Ewer has been housebound for many years due to CFS. Searching for thoughtful distractions from her pain and isolation, she has found some ways to expand her own world by reaching out to distant lands and even the far reaches of space.

See http://www.cfids.org/cfidslink/2007/070508.asp