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November 1, 2006
For an easier to read, larger type version, click here
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November 1, 2006
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Campaign for a Fair Name Picks Up Speed
CFS patients agree almost unanimously that the name the CDC uses to describe our illness is inappropriate. Patients find it humiliating and embarrassing, mostly because it trivializes the serious nature of the disease, while linking it to the most common of all health complaints, fatigue. Add "syndrome" at the end and throw in a "chronic" at the beginning, and you have the recipe for a bad name that damages patients in many ways. That is the consensus expressed in the more than 500 patient letters we have received in the past two months alone.
Patients are fed up with the name. Researchers are fed up with the name. And CFS doctors are fed up with the name.
To remedy this situation and establish an appropriate name, we have begun to organize an advisory committee consisting of some of the most respected CFS researchers and doctors in the United States. They will address the name change issue and provide a consensus opinion on appropriate alternative names. Early members of this "Dream Team" of experts include Dr. Lucinda Bateman, Dr. Leonard Jason, Dr. Charles Lapp, and Dr. Daniel Peterson. And this week I am delighted to announce the newest member, Dr. David Bell.
Dr. Bell is one of the world's leading authorities on CFS and is an instructor at Harvard Medical School and author of the acclaimed book, "The Doctor's Guide to Chronic Fatigue Syndrome: Understanding, Treating, and Living with CFIDS" (available at Amazon.com). He is eminently qualified to sit on the name change committee and his presence will be greatly appreciated by CFS sufferers everywhere. We are honored to have this compassionate humanitarian on board, and welcome him to the team.
The goal is find a suitable name to replace Chronic Fatigue Syndrome and then make it happen. Though the committee is not complete, we are only a few steps away.
Yours for better health,
Rich Carson
ProHealth Founder and CFS Patient
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Most of these CFS-related journal articles are currently offered online ahead of print:
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NIH Funds Important New CFS Research Studies
Selecting from 29 proposals, the National Institutes of Health has picked seven CFS studies to receive $4 million in funding.
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I Remember Me
ProHealth is honored to offer the acclaimed documentary, I Remember Me, for purchase at ProHealth's Immunesupport.com store! After winning awards and honors at numerous film festivals, including "Best Documentary" at the Denver Film Festival, the compelling film on Chronic Fatigue Syndrome, I Remember Me is now available on DVD. This 74-minute documentary portrays in powerful detail the gut wrenching agony sufferers must endure, while simultaneously facing the skepticism of a frequently uncaring and uninformed medical establishment. I Remember Me speaks to the universal themes of loss, human perseverance, and our difficulties in grappling with uncertainty.
Some of the film's highlights include interviews with noted Chronic Fatigue Syndrome researchers David Bell MD, Harvard; Drs. Daniel Peterson and Nancy Klimas MD (both past presidents of the International Association for Chronic Fatigue Syndrome); and world renowned virologist and immunologist, Jay Levy MD, co-discoverer of the HIV virus. Patient interviews include candid discussions with soccer star and gold medal Olympian Michelle Akers, and legendary Hollywood director Blake Edwards (Breakfast at Tiffany's, The Pink Panther).
For more information and reviews click here.
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Meet Rik Carlson (not to be confused with ProHealth's Rich Carson), a CFS Patient and 10-Year President of the Vermont CFIDS Association
Rik Carlson speaks for CFS patients everywhere in recounting his experience at "the receiving end of an 800 number," taking hundreds of calls asking the same thing: "Do you know a good doctor? My doctor doesn't believe this to be real." more
The Personal Story of a Doctor with CFS
"Most MD's practicing now were never formally educated on a devastating illness that affects up to one percent of the population," writes a Family Practice Physician currently debilitated with CFS. "When I revealed to my colleagues that I had CFS, it was like telling some of them that I had seen a UFO."
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| Chronic Fatigue Syndrome Education
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CDC Offers "CFS Toolkit" and Educational Courses for Healthcare Professionals
"To help break the cycle of frustration," the Centers for Disease Prevention and Control has created a Web page where physicians and others can find a growing collection of resources to guide them in the clinical care of CFS patients.
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| Disability Information and News |
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Patient Advocate Foundation (PAF) Will Act as Liaison
Did you know? This national non-profit organization will provide active mediation services to anyone with a chronic illness - working as a liaison with insurers, employers, creditors, healthcare providers.*
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"I think dogs are the most amazing creatures; they give unconditional love. For me they are the role model for being alive." - Gilda Radner
Consolations Along The Way
Chronic Fatigue Syndrome is a devasting disease, but nevertheless we often find consolations and new sources of pleasure along the way. To find out what other patients have learned, take a look at the CFS & FM Message Board thread titled "Let's discuss positive ways that FMS/CFIDS have affected you." As a formality, if you don't have a password you'll need to provide one - it takes less than a minute.
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At ProHealth we are committed to bringing you the most up-to-date information on Chronic Fatigue Syndrome and Fibromyalgia. We are always striving to improve our services, and your opinion counts. If you have any comments, suggestions or ideas, please let us know. Include your full name if you agree that we might share your letter with other readers.
Send Us Your Feedback
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Published by ProHealth, Inc., ImmuneSupport.com is the Web's largest resource for Fibromyalgia and Chronic Fatigue Syndrome. Since 1988, ProHealth has raised and donated over 2.5 million dollars to CFS and FM research and advocacy groups seeking a cure. We believe in "commerce with compassion."
Every purchase made at ImmuneSupport.com funds research - as does every purchase made from ProHealth's Health Resource catalog.
Visit ImmuneSupport.com
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* Note: This article first appeared in last week's FM Edition of CFS & FM Treatment & Research News (Oct 25, 2006)
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