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  [ 90 votes ]   [ Discuss This Article ] • December 1, 2004

Unum-Provident Corp. Accepts Multi-Million Dollar Settlement
On Nov. 18, 2004, Unum-Provident Corp., the nation’s largest disability carrier with 25 percent of the market nationwide, settled a multi-state investigation into claim denials. Unum will pay $15 million in fines and will be forced to re-examine 200,000 denied claims as part of the settlement. Attorneys general representing numerous states uncovered a corporate environment at Unum that encouraged looking “for every technical legal way to avoid paying a claim.” Persons with CFIDS (PWCs) may represent a sizable group within those improperly denied benefits. The investigation found that Unum relied solely on their in-house physicians and often failed to consider both physical and psychological conditions in determining whether to deny or terminate benefits. Scores of PWCs have reported these problems in their dealings with Unum and other insurers now owned by Unum. We’ve covered some of these stories in the CFIDS Chronicle over the years. Unum insures 25 million people, through individual and group policies written by: Unum Life Insurance Co. of America, the Paul Revere Life Insurance Co., the Provident Life and Casualty Insurance Co., Provident Life and Accident Insurance Co., and the First Unum Life Insurance Co. If you have been denied benefits under a Unum-held policy, contact your disability attorney or visit for details about the reconsideration process. The National Organization of Social Security Claimants Representatives provides a network of attorneys specializing in disability law. You can reach their referral service at 800-431-2804.

Immologic Aspects of CFS
The final article in a series of consensus statements generated by Association-sponsored research symposia was published in the Nov. 2004 issue of Neuroimmunomodulation. The paper represents the consensus of the panel of experts who participated in the October 2001 symposium convened to explore the possibility of an association between immune dysfunction and CFS, with special emphasis on the interactions between immune dysfunction and other abnormalities noted in the neuroendocrine and autonomic nervous systems of individuals with CFS. Copies of the article will be available through the Association next month by contacting the resource line at 704-365-2343.

CFS Advisory Committee Meeting Planned
The federal CFS Advisory Committee will hold its first meeting of 2005 on January 10 in Washington, D.C. There will be a special focus on youth with CFIDS at this meeting, and several guests with expertise and/or personal experience in this area have been invited to participate by committee chairman Dr. David Bell. The agenda is also expected to include health agency updates and public testimony. The meeting will be held at the Hubert Humphrey Building from 9:00 a.m. until 5:00 p.m. It is open to the public. The official meeting notice will be published in the Federal Register and will also be posted to along with details about how to register to present testimony. Those who don’t have internet access can reach committee staff at 202-690-7694.

Advocates Respond
CFIDS advocates have used the Association’s Grassroots Action Center to send more than 12,000 letters to Congress, federal health officials and writers, editors and producers. An Action Alert! sent out on Nov. 19 asked advocates to contact Fox network affiliates about a new tv medical drama, House. The show included a segment about CFIDS/FM that reinforced negative stereotypes. Within three days, nearly 1,000 letters were sent by advocates in response. The power of the internet and the passion of CFIDS advocates create a potent force. To learn more, click on the Capitol building icon on the Association’s home page ( There you’ll find numerous Action Alerts! and sample letters to facilitate your responses. Sign up for the listserv and be among the first to learn of timely opportunities to take action.

NIH Director Hears from CFIDS Advocates
On September 27, 2004, the CFIDS Association’s President & CEO Kim McCleary presented a detailed report to the federal CFS Advisory Committee documenting a steep decline in NIH funding for CFIDS research. An Action Alert! was issued that day through our Grassroots Action Center, asking advocates to write to NIH Director Dr. Elias Zerhouni to express concern about the erosion of support for CFIDS research. In the past month, 452 advocates have written to Dr. Zerhouni. Add your voice to theirs! Visit for more information and a sample letter. To request a copy of the report in its entirety, send an e-mail message to or call the resource line at 704-365-2343.

Decade by Decade:Board Leadership Provides Strength
Boards of nonprofit organizations serve an essential role in our society. They act as stewards and visionaries for such diverse entities as schools, hospitals, libraries, arts organizations, shelters for the abused and homeless, places of worship and health-related charities, including the CFIDS Association of America, Inc. The Association was founded in 1987 by Marc Iverson, who served as chairman of the board for 14 years. Over the past 18 years, the Association has been blessed with leadership from more than 70 individuals who have contributed their “time, talent and treasure” to shape and grow this organization. We extend our gratitude to all who have served on the Association’s Board. The Association has recently welcomed three new directors to its board: Diane Bean, Katrina Berne, Ph.D., and Terry Hedrick, Ph.D. Diane’s 21-year-old daughter, Lauren, has had CFIDS for six years. Diane works for the U.S. Department of State and learned much about governance as a member and chairman of her local school board. Trina is a clinical psychologist who retired from practice three years ago due to disability from CFIDS, from which she has suffered for 20 years. She was a member of the Arizona CFS Association’s Board of Directors, has authored numerous materials on CFIDS and has spoken at many CFIDS conferences around the country. Terry was assistant comptroller general for the U.S. General Accounting Office until CFIDS struck in 1994. She holds a Ph.D. in social psychology and has served on several boards, including the American Evaluation Society. All three members of the “class of 2005” bring much strength to the board and are dedicated to meeting the challenge of conquering CFIDS. In 2005 the board will meet monthly, most often by conference call. Susan Jacobs, J.D., will chair the board in the coming year, and Rick Baldwin will serve as vice chairman. Jane Perlmutter continues as treasurer in 2005, and John Trussler will be secretary. Lynn Royster, Ph.D., J.D., is leading the effort to develop a long-range strategic plan and Jane Perlmutter will chair the board’s Nominating Committee. The year’s officers balance long-term Association leadership with new insights and outside governance experience. They bring varied perspectives, as persons with CFIDS (PWCs), parents of PWCs, close friends and caregivers to PWCs, and as professionals in fields relevant to the Association’s work. The Association is approaching its 20-year anniversary of service to the CFIDS community and the board is carefully evaluating past performance and future opportunities. If you would like to be considered for board service, please submit a letter with a brief summary of your experience and interest to: Nominating Committee, CFIDS Association, PO Box 220398, Charlotte, NC 28222-0398 or Davis

Reaches Decade Service Mark

Jamie Davis, the Association’s Director of Development and Chief Operating Officer, will mark her 10-year anniversary of Association service this January. Jamie joins three other staff members in this achievement: Kristina Hopkins (14 years), Kim McCleary (nearly 14 years) and Nova Bouknight (11 years). Kris is the Association’s Controller; Kim is President & CEO and Nova is Support Network Services Coordinator. The Association has 12 full-time and one part-time staff members with an average tenure of more than six years. The staff’s intense loyalty and dedication to the Association’s mission is one of the Association’s most precious assets.

On October 1, the CFIDS Association launched its 2004 Annual Fund campaign. The campaign’s $900,000 goal is ambitious — it is also absolutely essential if we are to realize a much bigger, much more critical goal, ending CFIDS. More than 800,000 Americans are counting on us. A successful Annual Fund will enable us to fast track more important projects and bring improved health to men, women and children with CFIDS, sooner. The Association recognizes the dedication and remarkable generosity of Chairman’s Circle members. We are grateful for your year-round support of our results-oriented programs in education, public policy and research. The constancy of your support is essential to maintaining, and accelerating, the momentum of these vital efforts. At this time of year your mailbox, and your inbox, are likely flooded with calls for support. As you consider your final contributions for 2004, please remember the CFIDS Association. The Association works vigorously, every day, to make progress on behalf of people suffering from CFIDS and is the only organization with the programs, proven expertise and skill to lead the way. Making a donation is easy. Simply call our Resource Line at 704-365-2343 and ask Gloria to process your credit card contribution. Or mail your donation to the Association’s office: PO Box 220398, Charlotte, NC 28222-0398.

Provider Education Project
One of the most important ways the Association works to accomplish its mission is by promoting awareness and understanding of CFIDS to the medical community. Our Provider Education Project (PEP), a collaborative effort of the CFIDS Association and the Centers for Disease Control and Prevention (CDC), has undergone a number of changes and enhancements since it was introduced in 2000. But the mission of the project still holds true — to expand the knowledge base of health care providers and improve diagnosis and treatment of CFS. The primary care provider education project, CFS: Diagnosis and Management, has educated thousands of health care providers over the past four years. Many have participated in intensive two-day Train-the Trainer workshops led by CFS experts, then returned to their home areas to educate their colleagues about the illness through workshops, grand rounds and conferences. An 8x8-foot graphic display used at multidisciplinary provider conferences serves as the focus for the project’s educational exhibit. Year-to-date, the Association has participated in 16 national and regional medical conferences, including conferences of the American College of Physicians and the American Academy of Physician Assistants. At our exhibit, attendees receive CFS information and resources and learn how to earn free continuing education credits by completing a CFS curriculum developed by the CDC and the Association. Smaller banner-type displays were developed for use at regional conferences and patient meetings. Providers and support groups can borrow the banners when local opportunities arise. (To request the banner contact For more information about our efforts to educate health care providers about CFS and improve their abilities to diagnose and manage this complex illness, visit

The American Association for Chronic Fatigue Syndrome (AACFS) held its 7th bi-annual research/clinical/patient conference in Madison, Wisc., October 8-10. Participants included 123 researchers/clinicians and 112 patients/advocates. Fifty-nine of the 235 participants came from 16 countries outside the U.S. In a collaborative effort with the AACFS, the CFIDS Association will provide coverage of three-day meeting in the winter issue of the CFS Research Review. Summaries of each of the three conferences, which had some overlapping sessions, will be complemented by short features on some of the most promising research and clinical studies from around the world.

If you have not yet signed up to receive the Association’s free monthly e-newsletter, send a message to Kim Almond at today! CFIDS Link will keep you informed and in the loop.

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