This is a special edition of the CFIDSLink commemorating the 20th year of the CFIDS Association's service and honoring the many people and events that have shaped two decades of collective CFS history. Learn how we're approaching this milestone event and hear about some of the things in store for the coming year.
In this Issue
* From the Desk of Kim McCleary * Historically Speaking * People Making History * Ten Discoveries about the Biology of CFS * We Want to Hear Your Perspective!
From the Desk of Kim McCleary
History isn't just about the past—it's about the people and events that have helped shape the present and exploring patterns that may enlighten us about the future. CFIDS Association President and CEO Kim McCleary shares her take on the subject.
Together we're making CFS history. . . not only in the ways our collective efforts shape the course of the fight against CFS, but also in the way every research finding, donation, and compassionate action chips away at this devastating illness. Here's how the CFIDS Association plans to mark the passage of time, as the "good fight" moves into its third decade.
People make up a community and fuel a cause. So any look at CFS history must start with the people who've shaped it—in ways both large and small. Here are a few profiles of everyday people who've become champions of the cause.
Twenty years of research into CFS have uncovered many biologic findings about the way this illness affects the body. Here's a "print-and-go" handout listing 10 key discoveries, as described by Anthony Komaroff, MD, a professor of medicine at Harvard Medical School and a widely respected authority on CFS.
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, events, 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.
Nella sezione "People Making History" con link http://www.cfids.org...2007/062003.pdf tra le persone "importanti "nominate c ´é una italo-americana di New York, di nome Vivian Treves che ha collabotato alla realizzazione del film " I remember me"per la campagna di consapevolezza nazionale sulla CFS del 2006.
Sogna il giorno in cui sará capace di contribuire ancor piú alla diffusione della consapevolezza sulla CFS, non solo nel suo paese, ma globalmente, specialmente nella sua adorata Italia. "And she dreams of a day when she’ll be able to contribute even more to the work of spreading CFS awareness not just in this country, but globally, specially in her beloved Italy."
* 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.
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.
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.
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...fs/pr060807.pdf, a statement issued on June 12 at http://www.cfids.org.../gac_061207.asp and the full text of the research article at http://www.pophealth...m/content/5/1/5. Watch for an article abou the new Georgia study in the summer 2007 CFIDS Chronicle. To subscribe to the CFIDS Chronicle see http://www.cfids.org.../membership.asp.
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.
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.
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.
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).
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
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.
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.
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