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THE CFIDS UPDATE SUMMER 2004

  [ 2954 votes ]   [ Discuss This Article ]
www.ProHealth.com • August 16, 2004


From the Chairman of the Board
On May 28 I wrote to thank you for your participation in the Chairman’s Circle as well as ask you to consider increasing your already generous monthly gift. I am delighted to report that one of every three Chairman’s Circle members responded to my letter, many increasing, some even doubling their monthly gift. Other members wrote to share ideas, relay specific concerns and express why the Association’s work is important to them.

The Association’s 2003 Annual Report will mail next month along with the summer issue of the CFIDS Chronicle. As you read the report, I hope you will feel a sense of satisfaction about what we were able to accomplish and that you will continue to share your ideas and vision for how we can work together to bring an end to CFIDS. The constancy of your support helps accelerate vital Association-led efforts in CFIDS education, public policy and research. On behalf of the entire Board of Directors, please accept my deepest appreciation. Warm Regards,

Chairman’s Circle Dinner
A group of 25 gathered at the Washington Plaza Hotel in Washington, DC on the evening of June 20 for a special Chairman’s Circle dinner. Chairman’s Circle members and their guests enjoyed delicious food and lively conversation with Association Board members, staff and renowned CFS experts including David Bell, MD, FAAP and Charles Lapp, MD. If you would like us to keep you informed of other CFIDS Association events and opportunities, please contact Kim Almond at 704-364-0016 or kaalmond@cfids.org.

AWARE Talk Radio
is the nation’s most widely syndicated weekly “newstalk” radio program. The station provides the public with easy-to-understand information on health and personal well-being. AWARE recently interviewed award-winning author and person with CFIDS Laura Hillenbrand for a segment to air in the near future. This program will reach over 8 million people through internet broadcasts and more than 600 radio stations in over 95 cities. AWARE is also heard and archived on the website hosted by national chain pharmacy, Walgreens, at www.walgreens.com/about/community/aware.

Modafinil treatment shows promise
Modafinil has shown benefit in treating narcolepsy, sleep apnea and sleep abnormalities related to shift work. A small trial in FM patients points to its potential benefit, building on anecdotal reports from CFIDS and FM patients who have found it to be helpful. Modafinil, marketed in the U.S. by Cephalon under the trade name Provigil, has shown benefit in treating narcolepsy, sleep apnea and sleep abnormalities related to shift work. There have also been reports of successful treatment with modafinil for the fatigue in multiple sclerosis. It was recently approved in the U.K. for use in alleviating daytime sleepiness resulting from other neurological conditions such as Parkinson’s disease and myotonic dystrophy. Small studies of CFIDS and fibromyalgia (FM) patients indicate that it’s potentially useful for improving energy and alertness in these conditions as well. One such report comes from two doctors in the Philadelphia area, James L. Schaller, MD and David Behar, MD. They used modafinil to treat four patients with fatigue related to FM over an 18-month period, using 150 mg to 300 mg per day. Over the course of the open-label trial, the patients reported significant improvement in alertness and function improved from 55 to 70 on one scale, expressed by the patients as feeling that they could now “work” or “care for their children.” The doctors also noted that patients’ family members made unsolicited comments about the patient’s improved function.

Social Security Disability
Many CFIDS patients depend on disability insurance, especially programs provided by the U.S. government’s Social Security Administration (SSA). The Association publishes a free brochure that may help you and your doctor establish your Social Security Disability Insurance (SSDI) case. The brochure includes information about Supplemental Security Income (SSI), as well as resources to help you find an attorney. To request your free brochure call the Resource Line at 704-365-2343 or visit http://www.cfids.org/ecommerce/products.asp?setcategory=23.

Children CAN get CFS
An Association news release to local and regional newspapers through the North American Precis Syndicate (NAPS) has generated coverage in more than 360 newspapers in 33 states with combined readership of nearly 25 million. The release, “Children CAN get CFS,” focuses on the physical and cognitive problems kids with CFIDS experience, the high rate of misdiagnosis in children and the impact of CFIDS on education. Those interested in additional information were referred to a special section of the Association’s Website dedicated to CFIDS in youth. For more, visit www.cfids.org/youth/youth.asp

Provider Education Update
In 2004, the Association’s provider education project used a myriad of strategies to reach health care audiences with information about CFS. The Association exhibited at eight national major medical conferences generating new and valuable connections with physicians, physician assistants, nurse practitioners, and for the first time, rehabilitative professionals. Conference attendees were given free research updates and tools to help them better diagnose and manage the symptoms of CFS. Promotions and project-sponsored presentations on CFS also proved effective, increasing exposure within the medical community and spurring new collaborative efforts. Next steps… presentations at prestigious medical associations and universities including Harvard University, The American Public Health Association, and the Georgia and Louisiana chapters of the Academy of Physician Assistants. The addition of a DVD-based CFS curriculum has complemented the print-, VHS- and the especially popular web-based learning modules. Already surpassing 2003 figures, more providers are taking the initiative to educate themselves on CFS and share resources with their colleagues. The Association strives to reach medical professionals from diverse disciplines and continues to build its reputation as a credible, trusted source of CFS information. With time and persistence, these positive interactions will lead to earlier detection and diagnosis and advances in care for those who suffer from CFS.

How does CFIDS impact family members of a PWC?
When you become ill with CFIDS, it can dramatically change the lives of those around you. The CFIDS Association of America is gathering stories on the larger impact of this devastating disease. We’d like to hear from you and those people in your life who are also living with your illness. This includes spouses, children and siblings whose lives have been seriously affected by your illness. We believe these stories can help the general public understand the full extent of the toll CFIDS takes not just on CFIDS sufferers, but on everyone who cares about them. Please send your stories to Marcia Harmon at stories@cfids.org.

CFS Treatment Study in Los Angeles
Subjects are being recruited for a study on new diagnostic tests and a treatment agent for CFS. Patients will receive hormonal measurements, tilt-table testing and brain SPECT scans followed by a 6-week treatment with an experimental medication. Patients must be 18yrs to 49yrs. The study will occur at King-Drew Medical Center in Los Angeles, CA. Participants will be compensated. For more, contact Erik Zuckerbraun, MD or Ted Friedman, MD, PhD at 310-668-8754 or study @goodhormonehealth.com

Symposia Paper
In 2000 and 2001, the Association hosted a series of three scientific symposia designed to strengthen the overall research effort. Sponsorship from the NIH and the CDC helped attract dozens of top scientists from across the country to delve into published studies on CFIDS and set research priorities for further investigation. The “scientific court” assembled for each meeting evaluated evidence of abnormalities in the autonomic nervous system, the immune system and neuroendocrine system. Each symposia ended with the presentation of a consensus statement on the research in each area, followed by a discussion of the most promising avenues for research in that field. All three papers have been published in NeuroImmunoModulation, with the neuroendocrine symposia paper appearing this past February as the first article in Volume 11 of the journal.

Grassroots Action Center
On April 16 the Association launched its Grassroots Action Center, an interactive on-line tool to help advocates reach policymakers, federal health officials, media professionals and candidates for public office. In the four weeks leading up to May 12, CFIDS Awareness Day, advocates used the Center to express support for increased federal research funds for CFIDS and to raise awareness about the disease. To date, nearly 10,000 letters have been sent through the Grassroots Action Center. We’ve heard from advocates about the ease with which they used the Center to contact members of Congress and the media; they told us about the empowerment they experienced when a Congressional staffer called in response to their e-mail about research funding. They have sent us “clips” from newspapers where their Letters to the Editor appeared. The Association will issue Action Alerts! when timely opportunities for advocacy arise, but it’s not necessary to wait for a cue from us. Visit the Action Center by clicking on the ACT NOW icon on the home page and use the Action Center to help you become informed about candidates running for federal or state offices, expedite voter registration or track your member of Congress’ voting record. Join the GAC listserv at http://capwiz.com/cfids/mlm/ be among the first to engage in important advocacy efforts.

Revolutionary Women Conference
On July 27, 2004 Jamie Davis and Kim McCleary helped educate 4,100 participants at this special event in Boston. As the only disease-specific exhibitor, CFIDS took on special importance. Mothers, daughters, friends and co-workers of persons with CFIDS gladly received printed materials and the opportunity to talk about the devastating effect CFIDS had on a loved one. Health care professionals and policy makers also visited the booth, impressed by the wealth of information available to them. Speakers at the event included former Secretary of State Madeleine Albright, House Minority Leader Representative Nancy Pelosi and Senator Hillary Rodham Clinton. Event creator Barbara Lee, a philanthropist whose passion is empowering women to lead, addressed the capacity crowd. An earmarked gift from an anonymous donor enabled the Association to be represented at this dynamic event.

Mark Kahle has CFIDS
and like so many of his fellow CFIDS sufferers, the road to diagnosis was a bumpy one. He lost his family, his home, his job and his friends. And he almost lost hope, at times considering suicide. Then Mark read an article which led him to the Association. Here he found solid information about his illness and a sense of community. At last he had the hope that gave him the strength to keep fighting for his life. Today, Mark makes his home in Costa Rica. He joined a friend in an effort to build an environmentally conscious housing development. They agreed to raffle several of the “cabins” within the development and donate the profits to support causes they believed in — ending the pain and suffering caused by CFIDS and helping build a community library. Mark is raffling each cabin through yahoo.com. Tickets are $100.00 and the chance of winning is 1 in 2000. Visit www.ramshackcabins.com for more information.

Benefit Events “Scrapbook”
Read about recent Association benefit events and view our new online photo gallery at http://www.cfids.org/community/benefit-events.asp

CFIDS LINK
If you have not yet signed up to receive the Association’s monthly e-newsletter, send an e-mail to Kim Almond at kalmond@cfids.org today! CFIDS Link will keep you informed and in the loop. AACFS will hold its seventh International Conference on CFS, Fibromyalgia and other related illnesses in October 2004. Hosted by The Wisconsin CFS Association, the conference features clinical, research and patient sections. The conference will be held October 8-10, at the Alliant Energy Center in Madison, Wisconsin. Contact AACFS at http://www.aacfs.org/

Where there’s a will, there’s a way . . . to expand CFIDS research, public policy and education. Gifts by will, or bequests, both large and small, are vital to Association-led efforts aimed at ending the pain and disability caused by CFIDS. For many people, a carefully planned will is the foundation of their estate plan. With a will, you decide how best to provide for your loved ones as well as ensure your assets are distributed as you wish. In the absence of a will, a court will dictate the disposition of your assets based on state law. Sadly, it is estimated that 50-80% of all Americans die “intestate.” Executing a will, or revising your existing will, is neither difficult nor expensive. Your attorney (your local bar association may be able to help you find an attorney if you don’t have one) can advise you about ways to: • Precisely direct who will receive your assets, who will handle your estate and who will serve as guardian for children;
• Meet your charitable objectives by supporting the organizations and worthwhile causes that matter to you; and
• Minimize estate taxes and other related costs.
Many Association donors have expressed that their planned bequest is simply a continuation of the support they have given during their lifetime. To include the Association in your will, please note the organization’s correct legal designation: The CFIDS Association of America, Inc., a 501(c)(3) tax-exempt organization incorporated by the laws of the State of North Carolina. Federal Tax ID, 56-1683450. For more information, contact the Association’s Director of Development at 704-364-0466 or jldavis@cfids.org. If you have already included the Association in your will, please tell us about it and let us express our gratitude for your bequest today. However you choose to invest in the campaign to end CFIDS, the Association urges you to consult your attorney, financial planner or accountant before making any decisions that may impact your estate or long-term financial plans. On behalf of The CFIDS Association of America, we thank you for your support and encouragement in our efforts to conquer CFIDS.



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