ProHealth health Vitamin and Natural Supplement Store and Health
Home  |  Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help
Facebook Google Plus
Fibromyalgia  Chronic Fatigue Syndrome & M.E.  Lyme Disease  Natural Wellness  Supplement News  Forums  Our Story
Store     Brands   |   A-Z Index   |   Best Sellers   |   New Products   |   Deals & Specials   |   Under $10   |   SmartSavings Club

Trending News

SURVEY: Cognitive Impairment II

Top 3 Nutrients to Detox the Liver and Soothe Digestion

Natural Bladder Control, Go Less and Live More

Top Vitamin and Mineral Deficiencies — Are You at Risk?

Vital Molecule Increases Cellular Energy and Improves Cognitive Function

Omega Fix for Obesity: How the Right Fats Fight Fat

How Pomegranate May Protect Against Cancer

Trimming the spare tire: Canola oil may cut belly fat

The Onion: Cancer Fighter and Food Preserver

Safely Reduce a Common Cause of Stomach Distress

 
Print Page
Email Article

Name change gets boost

  [ 266 votes ]   [ 1 Comment ]
By Source: Healthwatch • www.ProHealth.com • January 1, 1999


Dr. Philip Lee, the respected former U.S. Assistant Secretary of Health and Human Services, gave the equivalent of electric shock therapy to the movement to scrap the name “chronic fatigue syndrome” in favor of something less polarizing, less trivializing.

On Saturday afternoon, when he was presented with the Gov. Rudy Perpich Leadership Award, Lee made a compelling argument for changing the name of the illness even before scientific research resolves questions about just what the illness really is.

“I believe it is time for a change in the name CFS,” Lee told a surprised audience that was spending the day listening to inconclusive but provocative reports of studies that attempted to hone in on the basis of the illness. Lee said the current name is the result of a committee definition of the illness that “has proven to be useful in some areas, such as prevalence studies,” but because most doctors have no respect for the name, it doesn’t serve patients well.

“The overlap in symptomatology with Gulf War syndrome, fibromyalgia and multiple chemical sensitivity warrants a thorough re-examination by the federal government. This illness needs the same kind of focused attention as is being put into AIDS,” Lee said. “I don’t know that we’ll get $1.7 billion (as is spent on AIDS research), but we should get more than the $10 million that is being spent on this illness now. “We need to move it forward. We need to get on with it,” he said.

The CFIDS Association of America sought to move it forward by co-sponsoring with the AACFS a forum held Monday evening at the close of the conference. Of the 12 U.S. patients who made formal statements, nine urged an immediate change in the name. Janet Dauble suggested environmental illness and Albert Donnay proposed multi-sensory sensitivity syndrome. Nancy Solo said the new name should incorporate brain disease. Pat Fero said scientists should choose a name, while John Herd suggested a summit format to select a new name.

On the other hand, Bobby Mulligan urged leaders of the two associations to focus on educating physicians with the current name, and John Trussler urged a delay until more is known about the etiology of the illness to take advantage of the educational opportunity afforded by a name change.

During the conference, researchers and clinicians were asked to complete a survey for their input on the issue. Researchers tended to feel the name was not a hindrance to them, while clinicians felt the name did make it more difficult for them to obtain appropriate specialist care for their patients, to get third-party reimbursement for their own services, and to assist their patients with disability issues. (Details from this survey will be included in the next issue.)

On the morning following the name change forum, the Department of Health and Human Services’ CFS Coordinating Committee picked up the momentum and assigned CFIDS Association Executive Director Kim Kenney to survey representatives of the international community about renaming CFS.

The issue remains a difficult one, as Dr. Anthony Komaroff of Harvard Medical School told The Boston Globe: “There’s unanimity on one point: The current name is really bad because it trivializes the illness, but we don’t know enough to choose the right name. And we’d damn well better get it right and be prepared to live with it for the next decade.”



Post a Comment

Featured Products From the ProHealth Store
Ultra ATP+, Double Strength FibroSleep™ Energy NADH™ 12.5mg


Article Comments Post a Comment

multi-sensory sensitivity syndrome only PART of CFIDS/CFS
Posted by: Allaine
Apr 28, 2009
I have severe sensory hypersensitivities, and data input overload that seems to be part of that. I suffer from CFIDS/CFS and qualify as having FM, too. I don't think changing the name of CFIDS/CFS is a good idea because the chronic exhaustion and mental fatigue is not even implied in the name "multi-sensory sensitivity syndrome." (If I understand this article correctly.) From my experience, I have this MSS too, IN ADDITION to CFIDS/CFS and FM. Also, is seems more accurate to use the word hypersensitivity rather than simply "sensitivity" -- everyone has senses that are sensitive in some aspect and to some degree. The prefix "multi" seems redundant and superflous, especially if the word sensitivity is change to the more accurately descriptive "hypersensitivity." I do think that CFS confuses doctors who equate it with chronic fatigue, which can be caused by lack of sleep, depression, or a number of factors, all of which, if treated, cure the chronic fatigue. Myalgic Encephalomyelitis (ME) doesn't work, either, for in my experience with SoluMedrol treatment for possible MS, the corticosteroid/anti-inflamatory made my symptoms much worse. I still think CFIDS is the best thus far, but it is not in global use like CFS and ME are. There will be drawbacks to any name. And and sufferer has a different experience, so a truly indicative name may not be possible.
Reply Reply
 
Natural Pain Relief Supplements

Featured Products

Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%
Vitamin D3 Extreme™ Vitamin D3 Extreme™
50,000 IU Vitamin D3 - Prescription Strength

Natural Remedies

Coconut Oil - Healthy Gifts from the 'Tree of Life' Coconut Oil - Healthy Gifts from the 'Tree of Life'
Herbal Rescue for High Blood Sugar Herbal Rescue for High Blood Sugar
Undenatured Type II Collagen - Chicken Soup for Your Joints Undenatured Type II Collagen - Chicken Soup for Your Joints
Health Benefits Are Brewing in Green Tea Health Benefits Are Brewing in Green Tea
Looking for Energy? Turn to Plants. Looking for Energy? Turn to Plants.

CONTACT US
ProHealth, Inc.
555 Maple Ave
Carpinteria, CA 93013
(800) 366-6056  |  Email

· Become a Wholesaler
· Vendor Inquiries
· Affiliate Program
SHOP WITH CONFIDENCE
Credit Card Processing
SUBSCRIBE TO OUR NEWSLETTERS
Get the latest news about Fibromyalgia, M.E/Chronic Fatigue Syndrome, Lyme Disease and Natural Wellness

CONNECT WITH US ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus

© 2016 ProHealth, Inc. All rights reserved. Pain Tracker App  |  Store  |  Customer Service  |  Guarantee  |  Privacy  |  Contact Us  |  Library  |  RSS  |  Site Map