The National Fibromyalgia Awareness Campaign, a non-profit organization committed to educating patients, doctors, and the public about Fibromyalgia, is creating the first-ever trade magazine on FMS. This print publication will be a full-color, 68-page magazine of the highest caliber and will be distributed on a quarterly basis by subscription, to NFAC members, and eventually in selected stores across the country. It will cover the latest news in research and treatment information, as well as articles to help manage FMS and live well despite this debilitating condition. A renowned Medical Advisory Board will oversee the quality and accuracy of the editorial content, and an Advertising Standards Committee will ensure the integrity of the publication and its advertisers. The premiere issue is tentatively scheduled for release in late October, 2001. Call NFAC at 714-921-0150 or use their website http://www.fmaware.com,

All of these highly recommended books are available from Amazon.com and other national chains. Purchased these books through this site and you donate a percentage of your purchase to our support group!

The Fibromyalgia Advocate: Getting the Support You Need to Cope with Fibromyalgia and Myofascial Pain Syndrome by Devin Starlanyl. Reviewers at Amazon.com gave this book five stars, calling it "extremely helpful and practical". (sover.net~devstar) 

What Your Doctor May Not Tell You About Fibromyalgia by R. Paul St. Amand, MD, and Claudia Marek. Contains the complete protocol for Guaifenesin therapy plus a great deal on FM in general. (Guaidoc.com) 

The Fibromyalgia Help Book: Practical Guide to Living Better With Fibromyalgia , by Jenny Fransen RN and I. Jon Russell MD, PhD, a well-known FM researcher in San Antonio. This book is a well rounded book, with sections on the problems of getting an FMS diagnosis, memory and concentration difficulties, lifestyle adjustments and employment issues. 

Inside Fibromyalgia, by Mark J. Pellegrino, MD. This new book from a doctor with FM makes available to everyone the same help and advice given to over 10,000 FM patients who have entrusted their well being to Dr. Pellegrino. He covers the newest information on medications, alternative therapies, and everything in between.

The April 2001 issue of Australian Family Physician contains an excellent introduction to FM. The article was titled "Fibromyalgia: What Is It and How Do We Treat It?" It included the following: "Management of simple fibromyalgia involves education regarding the nature of the problem, an exercise program and advice on stress management. However, management needs to be flexible and holistic and may involve relaxation programs, physical therapies, cognitive behavioral therapy and analgesic medication." (Thanks to co-cure.org for this information.)

Say goodbye to diet soft drinks and most sugar-free foods! Fibromyalgia patients who stopped consuming monosodium glutamate (MSG) and aspartame (Nutrasweet) discovered that their symptoms disappeared completely, or almost completely, within a few months.

Researchers at the Malcolm Randall Veterans Affairs Medical Center in Gainesville, Florida, studied four women who had been diagnosed with FM for two to 17 years. All four women had tried numerous treatments over the years with limited success. All experienced a relapse of FM symptoms whenever MSG and/or Aspartame were consumed.

MSG and Aspartame are "excitotoxins". They act as excitatory neurotransmitters, and are believed to be neurotoxic when consumed in large quantities. ("Neurotoxic" means it injure neurons, the cells that make up the brain and other parts of the central nervous system.)

The researchers proposed that these women represent a subset of FM exacerbated by excitotoxins, or that the subset may comprise a separate "excitotoxin syndrome" similar to FM. Though further research needs to be done with larger numbers of patients, they concluded that eliminating MSG and Aspartame from the diet of Fibromyalgia patients has the potential for dramatic symptom relief in a subset of patients. (Ann Pharmacother 2001 Jun;35(6): 702-6) Thanks to co-cure.org for this information.

Leila Pahlavi, the youngest daughter of the Shah of Iran, was found dead June 10 in her London hotel residence. The princess, 31, who had been very depressed, died in her sleep. A post-mortem exam failed to reveal any cause of death. Police said there were no suspicious circumstances. Leila suffered from CFS for six years. Three months ago she was hospitalized due to side effects from medication, including respiratory problems.

Leila was nine when her family fled Tehran. Since graduating from Brown University in 1992, she spent most of her time in Europe and the United States. (from co-cure.org - Keith Sinclair's article in the Glasgow Herald)

In May 29, the Glasgow Sunday Mail reported that approximately 2500 young people in Scotland have been affected by "a hidden plague of devastating myalgic encephalomyelitis". (Though the definitions vary slightly, many believe M.E. is identical to CFS.) Research determined that 51 percent of long-term absentees had this debilitating illness. Advocacy groups are calling for further research and education of medical professionals.

Kirsty Strain first showed symptoms at age nine. It took doctors eight years to diagnose her. She was unable to attend school and descended into a suicidal depression. She said: "I lost my youth to M.E. It made me angry that the condition was not diagnosed sooner." Kirsty, now 20, has made significant progress and is pursuing her education. (Thanks to co-cure.org)

Most health care providers know very little about CFIDS. Few medical journal articles about recent CFIDS research findings reach practicing physicians. Many doctors are reluctant to diagnose CFIDS, much less treat it. One study found that 90% of those with CFIDS go undiagnosed.

To address this need, the CFIDS Association of America and the Illinois Area Health Education Centers (AHEC) Program have partnered with federal and private agencies to launch a new program to educate health care providers about CFIDS. A group of national CFIDS experts developed the curriculum, which will be made available over the next year via the web, live presentations, and a video. Providers will earn continuing education credits when they complete the course.

The program has already begun training instructors. The first two-day "train-the-trainer" workshop was held in Charlotte in April and attracted 20 providers. One doctor from Florida recalled hearing about national CFIDS expert Dr. Charles Lapp, one of the instructors, when she was in medical school years ago. "The faculty called him a quack. Now I see these patients in my practice and I know they are ill. I just want to help spread the word."

Several other train-the-trainer workshops are planned for 2001. In return for travel expenses and a modest stipend, each new trainer agrees to teach 40 other primary care providers before October 1, 2001. Your doctor, physician assistant, and/or nurse practitioner can obtain information about this program by contacting Terri Lupton, RN, the CFIDS Association's Coordinator for Educational Opportunities, at tlupton@cfids.org or 704-365-2343.

Lupton, who has spoken with scores of providers, said the most commonly expressed sentiment is frustration in managing this disorder. She added that they are hungry for practical information that will enable them to help their patients. A few providers confided to her that treating CFIDS patients can be a very isolating experience. With so few doctors treating or even recognizing CFIDS, it's difficult to make referrals to specialists when needed. "They're are desperate for help, in ways that are similar to the CFIDS patients who need to be cared for."

(Excerpted from the Spring 2001 issue of The CFS Research Review, a publication of the CFIDS Association of America, PO Box 220398, Charlotte NC 28222-0398, 800/442-3437, 704/365-2343, www.cfids.org

David Bell, MD, the leading pediatric CFIDS clinician, recently surveyed 35 young people who contracted CFIDS between 1984 and 1987. Average age at onset was 12 years. Of the 35 participants, 22.9% had an acute onset and 77.1% had a gradual onset. No one received a different diagnosis in later years. When asked about their current health, 37.1% considered themselves completely recovered, 42.9% well, though not completely symptom free, 11.4% chronically ill, and 8.6% worse. In other words, 80% recovered or could function, and 20% remained ill. (Pediatrics Vol. 107 No. 5 May 2001, pp. 994-998) Thanks to co-cure.org for this information.

We had a great response to the email concerning what drugs or supplements help anxiety. Thanks to all who replied.

It raised a concern that I want to share, however. The majority of responses included either Paxil, Zoloft, Prozac or Celexa. These drugs are all SSRI's - Selective Serotonin Reuptake Inhibitors. There is a well-substantiated theory and a great deal of clinical experience that long-term use of SSRI's leads to neurological damage. As Dr. Cheney puts it, SSRI's (and stimulants like Ritalin and Provigil) "fry your brain". They result in the death of brain cells - neurons. Harvard doctors were the first to notice and publish this info, and it has been backed up by other Ivy League doctors/professors.

After using Prozac for about ten-years, patients started showing up in record numbers at their doctor's offices with neurological symptoms - trembling hands, twitching eyebrows, tics, etc. The conclusion many doctors have come to is that SSRI's cause neuro-degenerative disorders. 

The book that explains the dangers and proposes safe alternatives is "Prozac Backlash" by Joseph Glenmullen, a Harvard psychiatrist. It's available online and at most bookstores and libraries. 

Dr. Cheney is strongly encouraging all CFS patients to get off SSRI's - carefully - not cold turkey. This whole issue is discussed in the recent April issue of our newsletter. You can find it on our website in the "Cheney Treatment Section" - www.dfwcfids.org. The article is called "Dr. Cheney on SSRI's and Stimulants: 'Frying' the Brain." The article on Klonopin is actually an accompanying article, and they are best read together. 

I don't want to alarm anyone, but if you are taking one of these medications, I feel this is information you and your doctor should be aware of and discuss in order to make the best treatment decision for you. As always, consult your own doctor.

I thought the following announcement might be of interest, particularly the many Metroplex folks who cannot get to our meetings, want some type of interaction and support, but are overwhelmed at the thought of joining an email discussion group with hundreds of members.  

For those unfamiliar with this format, it is not a chat room. It is an email discussion list. You sign up ("subscribe" - but it's free) and every email that any list member sends to the list is automatically sent to you. Likewise, if you send an email to the list, it is automatically sent to everyone else on the list. It is very possible, likely, and easy for members to email each other privately. It's called "back-channeling". 

To ensure privacy (and keep list email from possibly flooding your regular inbox), some people go to yahoo.com or hotmail.com and open a free email account under a different name and use it just for the list. Take care. Carol Sieverling

Seventeen people have joined the larger, "clearinghouse" smallgroups group. It is an open group, and new members are very much welcome. Its current members are quite supportive of one another, as our illness permits. We have recently voted to begin small, by forming only two actual online smallgroups for now.

The first of these groups has just been formed, and is called CFS-MEsmallgroup1. The URL is at the end of this post. This group will be an online support and information group for people with CFS-M.E. ("Chronic Fatigue Syndrome" and/or "Myalgic Encephalomyelitis"). It includes people who also have FM (Fibromyalgia). Soon, however, a separate smallgroup for folks who have "only" FM, without apparent viral involvement, will be formed. Watch for an announcement.

If you feel the need for a small, supportive group who share information and understanding, please consider joining our first smallgroup. We need you for this project to work! In a smallgroup, we can get to know and support one another, just as we would in a small "real world" CFS-M.E. support group. (For many of us the latter is impossible -- either because one doesn't exist in our community, or because we don't have the energy to go to a group.)

Eventually, other "shared factors"--such as severity of illness, gender, geography, presence of another illness, singleness vs. partnered, age, etc. may figure in the creation of new small groups. The structure is fluid and democratic.

To read more about the larger group and the vision for smallgroups, check out the CFS-FM-MEsmallgroups site. Please join this larger group if you are so inclined. We need all the feedback and numbers possible.

[Note: If CFS-MEsmallgroup1, or any other smallgroup, starts to grow above about 15 people, the "overflow" can just become CFS-MEsmallgroup2, etc. That's part of the beauty of the idea!]

If you have a problem accessing the URL of the new group due to an eGroup/Yahoogroup conflict, please post me privately at lyneasea@cs.com, and I'll walk you through how to link your account/add a second email address to the one you have.

*People* are needed to make this really work. Please note: *No one* will be expected to "keep up" or post in a smallgroup unless they feel up to it. "Lurkers" are welcome! [Definition inserted by Carol: lurkers are those who subscribe to a list, but never post - send - any emails to the group. They only read what others write.]

Yours in Support,

Lynea Search, Owner and Moderator CFS-FM-MEsmallgroups http://groups.yahoo.com/group/CFS-FM-MEsmallgroups

The CFIDS/FMS Support Group of DFW is headed up by

Many thanks to the amazing women at Emmanuel Presbyterian Church. They continue to willingly take care of the folding, stapling, and labeling of this newsletter. We are very grateful for all your hard work on our behalf.

Many thanks also to Harris Methodist HEB Hospital. They allow us to continue using their facilities to print this newsletter. Your support is greatly appreciated. Without you all this publication would not be possible.

Published quarterly, the DFW Lighthouse strives to inform its members and the public about a variety of topics related to chronic Fatigue Syndrome and Fibromyalgia and provide information on advocacy issues. The CFS/FM Support Group of DFW does not endorse particular products or services, and the ideas expressed the in the DFW Lighthouse are strictly those of the authors or the quoted individuals. The CFS/FM Support Group of DFW, and the DFW Lighthouse assume no liability for any medical treatment or other activity undertaken by readers. For any medical advice, consult your health-care provider. 

Submissions for the DFW Lighthouse may be sent electronically to Carol. We reserve the right to edit all submissions. You must have permission before reproducing any material from the DFW Lighthouse. This may be obtained by contacting Carol Sieverling at 513 Janann Street, Euless TX 76039, 817-283-1115, or via email. For any computer-related problems or services, design, layout, editing or writing services (preferably for hire, but pro-bono services will be considered), contact LJ Fidler. Copyright © 2000 by The CFS/FM Support Group of DFW, www.dfwcfids.org/. All rights reserved.

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