CFS and FMS Support Group of DFW - Quarterly Newsletters

We meet from 7:00 to 8:30 P.M. on the third Tuesday of each month at Harris Methodist HEB Hospital, located at Hwy 183 and Hospital Parkway in Bedford. (Map - From Ft. Worth take the Central Dr. Exit and go straight on the access road; from Dallas take the same exit and do a U-turn under the freeway onto the access road.) We meet in the Conference Room to the right of the revolving door entrance to the Edwards Cancer Center (the wing closest to the freeway.) Call Carol Sieverling (817-283-1115) for more info. SOME PATIENTS ARE AFFECTED BY CHEMICAL ODORS. PLEASE DO NOT WEAR PERFUME OR COLOGNE TO THE MEETING.

JANUARY 19 - CAROL SIEVERLING

CHRONIC ILLNESS AND SPIRITUAL ISSUES

Carol Sieverling, our support group leader, will share some of the spiritual resources, insights and struggles that have been part of her journey with CFIDS. After teaching high school and serving as a missionary in Japan and Pakistan, Carol graduated from Union Theological Seminary in Virginia and the Presbyterian School of Christian Education. She pastored a church in North Carolina and served as an adjunct hospital chaplain. While her own perspective and strength are found within the Christian tradition, the meeting will not assume or impose any particular form of spirituality on those attending.

FEBRUARY 16 - DR. JAMES DOWNS
AMALGAM REMOVAL AND CAVITATION SURGERY

Dr. Downs will address dental issues of concern to those with chronic illness. As a PWC (Person with CFIDS), Dr. Downs has first-hand knowledge of the complexity and seriousness of our illness. He is a dentist with specialized knowledge of mercury amalgam removal and cavitation surgery. (Cavitation refers to a benign abcess in or around the jaw bone.) Dr. Downs also has degrees in microbiology and medical technology. He did medical research for the U.S. Air Force and at the University of Texas Health Science Center at San Antonio, including work with alpha interferon and viruses. This background gives him a great deal of insight into Chronic Fatigue Syndrome.

MARCH 16 - FRANKIE BURGET, ROT, RMT, CNDT
MYOFASCIAL RELEASE THERAPY

If traditional physical therapy has failed you, then Myofascial Release Therapy may be answer for which you have been looking. Frankie is a registered occupational therapist, a registered massage therapist and has special certification in neuromuscular development techniques. She has trained under nationally recognized Myofascial Release specialist John Barnes. She works out of both Euless and Dallas, making her accessible to the entire metroplex. A great many of her patients have FM and find her treatment to be of great benefit. Myofascial Release utilizes a gentle form of stretching to eliminate pain and restore motion. This treatment requires an understanding of the body's fascial system, a tough connective tissue that surrounds every muscle, bone, nerve, blood vessel and organ of the body. Malfunction of this system can create a binding down of the fascia, resulting in abnormal pressure on nerves, muscles, bones, or organs. This can create pain or malfunction throughout the body, sometimes with bizarre side effects and seemingly unrelated symptoms. If you live with pain and discomfort, don't miss this meeting!

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We Won!

Our support group received The CFIDS Association of America's 1998 Action Award for our Awareness Month activities last May, which were written up in the July/August and September/October issues of The Chronicle. The award includes $150 of our choice of educational materials! Thanks and congratulations to the many people to contributed to those efforts.

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CDC Says CFIDS is 20 Times More Common Than Previously Stated

The CDC released CFIDS prevalence figures from its $1.7 million study of 90,000 people in Wichita, KS. They found that about 2 out of every 1,000 adults met the criteria for CFIDS. Few of those identified had been diagnosed and most were not under a doctor's care. They found that CFIDS affects both genders, all racial and ethnic groups, and adolescents. However white women have the greatest risk for this disease. CFIDS in women is about three times more prevalent than HIV and one-third as prevalent as diabetes. Actual statistics: cases per 100,000 adults 183; cases per 100,000 men 53; cases per 100,000 women 303; cases per 100,000 white women 340. (These figures are still assumed to be on the low side, since anyone under 18, over 65, or having a diagnosis of melancholic depression was excluded from the study.)

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Budget - In The Black For Now

Thanks to the generosity of many people, we are beginning the new year with $220 in cash plus $150 set aside for our 501(c)3 application.

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Use Your Computer to Raise Money for CFIDS/FMS

You can raise over $100 a year for your favorite non-profit group (The CFIDS Association, FM Network, etc.) simply by spending a few minutes each day on the internet at www.igive.com. All you do is click on the links of five advertisers who then contribute to your designated charity. If you purchase something you can raise even more, since most donate a percentage of your purchase to your charity. When our group has nonprofit status you can send funds our way! You can change your designated charity whenever you like, as often as you like. Please sign up and start clicking.

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Help Needed

If you have e-mail you can contribute to our group's educational mission and help us save money. We would like to post a great deal of information on our website. This would save us postage and duplicating costs, since many people could then access information at home or work, or through a friend or a library rather than having it mailed to them. Scanning has not proven workable, and it is too big a job for our webmaster, who is already doing so much. We'll have articles available at the next meeting that you can take home and retype and e-mail to our webmaster, or you can contact Carol Sieverling to receive some by mail.

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Amazon.Com

Our webmaster is also in the process of setting up a link on our page to Amazon.com that will be a money maker for us. A percentage of the cost of the books ordered from Amazon through our link will come to our group. The percentage is higher if we have the books listed and reviewed. If you have read a book and would like to write a review to be posted on the website, contact Deborah Slaton via e-mail at deborah@virtualhometown.com

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Meet Our Members

Don't forget to check out our website since Deborah is continually updating it. We would really like for more members to send her information about themselves for the "Meet Our Members" category. Many cannot get to meetings, and this is a way to become something of a virtual family. You don't have to have to be on the internet to be on the webpage. Just send information to Deborah.

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Newsletter Available by Email

Get faster delivery, reduce postage costs, and save someone the effort of folding and stapling your newsletter by receiving it via e-mail. Just send Carol Sieverling a brief message.

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Property Tax Reduced for the Disabled

If you are on disability and own your own home, your can have your property tax reduced. Call your county appraiser's office. Thanks to Reggie McNamara for alerting us to this opportunity which can of help to those who most need it.

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Send In Submissions for Our New Column: "It's Helped Me"

Several members have requested a new column that will serve as a forum for sharing things that have worked for you. It will be called "It's Helped Me". Send Carol Sieverling brief, concise accounts of what has helped you physically, emotionally or spiritually: medicine, treatment, book, poem, prayer, gadget, supplement, etc.

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Disability Update

An interesting letter is available on our website, re-posted there from a very credible internet source. It appears to be a letter from an attorney for the insurance company UNUM presented at an insurance industry conference concerning on ERISA litigation. This insider's view of the insurance industry deals with "subjective symptom disability claims: CFS, FM, and MCS." This could be of great interest to anyone dealing with LTD issues and their attorney. The insurance industry is nervous: CFIDS disability claims have increased 900% since 1992.

Congratulations to Patricia Thompson. She went to court in December for her appeal. (Like most people she was denied when she first applied for SSDI.) Despite witnesses who said she was able to work the judge ruled in her favor! It didn't completely feel like a win since she wishes she were able to go back to work. However, until she can, this is an important win in terms of having the illness recognized, especially by a judge for whom this was a first CFIDS case. Patricia knows her way around both the SS and LTD disability processes and would be glad to help others. Contact her at 972-218-5743.

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Social Services

Texas has a little-known program called "community-based alternatives" which is part of the state Medicaid program. Itís for people who are at risk of going into a nursing home, based on their level of function, with the goal of letting them stay in their homes. It pays for someone to help with household tasks, certain equipment, and doctor-ordered non-prescription items. You may be able to get a budget of hundreds of dollars per month for supplements and vitamins. For information call the Texas Department of Human Services or contact Barbara J. Williams at 3101 Spencer Hwy #173, Pasadena TX 77504. (Thanks to the CFIDS Chronicle for printing this information.)

LOCAL SOCIAL SERVICES

We would like to compile a reference list of available social or community services for those facing financial difficulties due to these illnesses. This task will be complicated by the fact that the services will vary depending upon which city/county you live in. Please send any information you may have to Carol Sieverling at 513 Janann St Euless TX or Carol Sieverling.

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Substance P Update

Dr. Jon Russell, of the University of Texas Health Science Center at San Antonio, presented new information concerning FM at the American Pain Society Conference this fall concerning Substance P, tryptophan, and serotonin. Dr. Russell's research indicates that serotonin, a neurotransmitter which can affect mood, sleep and pain, is low in all body fluids of FM patients. One of its precursors, tryptophan, is also low. There are indications that trytophan is being shunted off to a different metabolic pathway which does not produce serotonin but instead produces a neurotoxic by-product known as kynurinine.

Russell also found a 300% increase in the levels of substance P in FM patients, a neurochemical that is associated with the sensation of pain. He found that low levels of a serotonin metabolite (5-HIAA) correspond with high levels of substance P. Further research on this correlation may lead to a disease severity marker for FMS using easy-to-obtain urine samples!!

Dr. Karl Henriksson of Sweden has tested CFS patients who don't experience much pain and found that their substance P levels are normal. Russell found a 200% increase of substance P in people with rheumatoid arthritis and lupus, no increase in people with diabetic neuropathy, and a 20% increase in those with major depression.

Fibromyalgia appears in roughly 2% of the population, mostly women. By comparison, rheumatoid arthritis is estimated to occur in about 1% of the population.

(More information on this topic can be found in the January 1999 issue of Fibromyalgia Network. Call 1-800-853-2929 to subscribe.)

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Cheney - Possible Speaker for 1999

Dr. Cheney has agreed to waive his honorarium and speak to us on a weekend that he has free if we provide airfare and hotel accomodations. (Other nationally known specialists charge $1,000 for speaking engagements.) This is an amazing opportunity for our group. We need donations toward this effort, or better yet we need people with connections to airlines (probably Delta) and to hotels to explore reduced or free arrangements. Please send checks made out to Carol Sieverling and ear-marked for Cheney, or contact her if you have some connections. If other arrangements are made, any contributions will be returned unless you indicate that they can go into the general fund.

For those who may not know of Dr. Cheney, his is one of the most recognized names in CFIDS treatment and research. He was one of the doctors who recognized an outbreak of "something" in their practice an Incline Village at Lake Tahoe in 1984 and called in the CDC. The index of Osler's Web, the classic text on the history of CFIDS, lists 46 reference categories for Dr. Cheney, far more than any other doctor or researcher. He is mentioned on 212 of the 696 pages. He has treated over 3000 patients with CFIDS from 48 states and 15 countries. He currently is Professor of Medicine and Chair of the Nutrition Department at Capitol University of Integrative Medicine in Washington D.C. Dr. Cheney has published numerous articles in peer reviewed medical journals and lectured around the world on the subject of CFS and was a founding Director of the American Association of Chronic Fatigue Syndrome (AACFS), a professional association of scientists and clinicians. He has held research positions in tumor immunology at the CDC in Atlanta, the departments of pharmacology and radiation oncology at Emory University School of Medicine, and the prestigious Wistar Institute on the campus of the University of Pennsylvania. Dr. Cheney was Chief of Medicine at Mt. Home Air Force base hospital in Mt. Home, Idaho and Chief of Medicine at Lakeshore Hospital on the North Shore of Lake Tahoe in Incline Village, NV. He was chosen to chair a select panel of nationally known clinicians to discuss treatment at the CFS Conference sponsored by the AACFS and Harvard Medical School this last October. Dr. Cheney has authored, or co-authored, publications and scientific presentations in many fields relevant to CFS including: immunology, virology, clinical epidemiology, metabolism, neuropsychology & neuroendocrinology, exercise physiology, computerized EEG brain mapping, as well as clinical treatment trials of Ampligen.

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Brainmapping Shows Same Cognitive Disorder in FM & CFIDS

Dr. Flor-Henry of Alberta, Canada has been brainmapping both CFS and FM patients. (Very similar to Dr. Myra Preston.) He believes that though the illnesses have different triggers, the same cognitive dysfunction results. He also believes, as does Dr. Preston, that this dysfunction is unique to these illnesses and will eventually constitute a diagnostic marker. Interestingly, he found that small lesions in the left hemisphere correlate with pronounced reductions in T cells and natural killer cell activity, but similar lesions in the right hemisphere did not influence immune function.

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FM Research: Melatonin Levels

Swedish researchers have shown that blood concentrations of two melatonin precursors (tryptophan and seratonin) are low in FM patients. These substances affect both sleep and pain perception. They concluded that people with FM have a lower melatonin secretion during the hours of darkness than healthy subjects and that this may contribute to impaired sleep, fatigue, and pain.

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Medical Journals Cover CFS and Alternative Medicine

In September the American Journal of Medicine published nine articles on CFS. In November the AMA published 80 separate articles on alternative medicine in its scientific journals.

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Media Coverage

In October the Boston Globe ran three excellent articles on the higher CDC prevalence figures and the CDC misuse of CFS research funds.

On December 18th, the Globe also ran a fabulous editorial about the seriousness of CFIDS and the need for a new name.

On December 28th the Wall Street Journal ran a very disturbing piece entitled "Chronic Disability Payments" which upset and indeed enraged many in the CFIDS community. To read the article, find out where and how to respond to it check out at www.cfids.org on the www.

Though I learned about it after the fact and have not heard any feedback, the Leeza show devoted almost an entire episode to FM.

On the local front, Harris Methodist Hospital System published a piece about our support group in its fall publication of "Regarding Women." Again, we are grateful to Cindy Wright, the Director of Community Relations at Harris Methodist HEB, for arranging the article.

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CFIDS Rest-A-Thon

CFIDS Emergency Relief Services, (CFIDSERS), a national nonprofit foundation, is announcing the First Annual CFIDSERS Rest-A-Thon. The goal is to raise money for the organization and to raise awareness of CFIDS. They are encouraging those with CFIDS (and their families and friends) to use a form they provide to collect sponsors who pledge by the hour (or make a donation) for each hour you rest in bed, on the couch, or in a recliner. The suggested days are February 6 & 7, or February 13 &14. Contact http://www.cfidsers.org/ or Sheryl Jefferies Event Coordinator PO Box 3121 Tuscaloosa, AL 35403 for more information.

The CFIDS Emergency Relief Services was established by a college professor disabled with CFIDS who has used much of her own personal resources to help those facing extreme financial hardship. Without additional funds they will not be able to continue the limited assistance they now offer. Only a few PWCís at a time can be helped, and funding is only provided if it will solve a finite problem. Past grants have provided recliners, air conditioners, air purifiers, and veterinary care for the beloved pets of the severely ill and disabled. If a regularly scheduled disability check or other source of income is delayed, grants have been made to insurance companies to prevent policies from lapsing and to mortgage companies to prevent foreclosure. All requests are checked for legitimacy.

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Gulf War Syndrome

Several well-known CFIDS researchers, including John DeLuca and Benjamin Natelson, were involved in a study of 72 Gulf War Veterans with severe fatigue and/or chemical sensitivity. The study was conducted by the Center for Environmental Hazards Research and the VA Medical Center in East Orange, NJ. Of the 72 ill veterans, 33 met the criteria for CFS. Fourteen of those also had concurrent MCS. Six were diagnosed with only Multiple Chemical Sensitivities.

24 of the veterans with CFS were compared to 95 non-veterans with CFS. The veterans group was composed of significantly fewer women and Caucasians than the civilian group, and fewer reported sudden onset to their illness. They also had a milder form of CFS than the civilians. For more information go to the website PubMed and Enter 99081050 in the search box and click on the author's name (Polet C, Natelson BH ...) when it appears.

The Pentagon and Verterans Affairs are about to spend 20 million dollars on randomized, controlled studies aimed at treating GWS. Two trials are beginning in January. The first will use antibiotics to treat 450 veterans who tested positive for the bacteria mycoplasma fermentans. The second trial will treat 1,356 veterans suffering from fatigue, memory problems, and muscle & joint pain with behavior therapy and exercise. (Anyone care to guess how successful that will be?)

In 1997 the CDC surveyed 4,000 reservists who served in the Gulf and 4,000 reservists who did not. Of those who went, 45% had fatigue, cognitive problems, and musclo-skeletal pain, 6% of them severely. Of those reservists who did not go, 15% had the same symptoms, 0.7% of them severely. Interestingly, the CDCís survey of San Franciso residents had similar numbers: 15% had a mild form of the three symptoms, 0.7% the severe form.

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