Fibromyalgia Resource

Treatment & Research News January 17, 2007
OUR MISSION "To empower patients to take control of their health by providing current research and treatment information, quality health products, community, and advocacy." more $2.5 Million Raised and Donated to Research. more
This Week's Highlights   · Role of infection in initiating ME/CFS · Stanford recruits for CFS antiviral trial · CFS, FM, MCS commonalities · A practical look at pacing for ME/CFS · Cranial electrotherapy: benefits emerging · Phase III trial of Omega-3s; depression · Abstracts on CFS - HHV-6 links, more · International viewpoints & other letters
THIS WEEK'S SPECIAL NEW PRODUCTS L-TRYPTOPHAN - For improved sleep, mood support and to reduce stress ALCIS - Pain relief cream HEART RATE MONITOR - Accurate tracking during exercise FIBRONOL - Supports sleep FIBROBOOST - Supports sleep - Extra energy boost STEVIA EXTRACT - All-natural sweetener EZ DOSE PILL POUCHES - Zipper-sealed, durable FEELBRIGHTLIGHT - Full spectrum light for Seasonal Affective Disorder BOOKS - Research & information Informational DVD's The Joy of Nutrition An optimum nutrient food program I Remember Me An award-winning documentary film Fibromyalgia: Show Me Where It Hurts An invaluable educational tool This Week's Highest Rated BRAIN DMAE Phosphatidyl Choline DETOXIFICATION Guaifenesin FA Milk Thistle DIGESTION Pro-Dophilus With FOS Psyllium Husk ENERGY NADH Fatigued to Fantastic Mitochondria Ignite IMMUNE Moducare Lactoferrin Plus Transfer Factor Essentials MOOD 5-HTP St. John's Wort SAM-e PAIN Fibro Freedom ProEnzyme™ P SLEEP ZMA™ Valerian w/ Lemon Balm Most Popular for Energy Support Enada NADH	Founder's Corner Chronic Fatigue Syndrome Name Change Imminent It is late at night and I am jet lagged, having just returned from Florida where the CFS Name Change Advisory Board met to discuss a possible name change for Chronic Fatigue Syndrome. The Fort Lauderdale meeting took place Friday January 12, and coincided with the IACFS conference, in a city that was warm, tropical, and very, very windy. I would like to think that those were the winds of change. Board members included Drs. Lucinda Bateman, David Bell, Paul Cheney, Leonard Jason, Nancy Klimas, Anthony Komaroff, Charles Lapp, and Daniel Peterson (via telephone). Putting this team of the nation's leading CFS researchers together has been a lot of fun (and work), and happily, everything went as planned. The scientists arrived, and proceeded together as a congenial, social group - partially the result of a prearranged limousine ride that delivered all of us to a lovely restaurant with great food, good service, and importantly, a private meeting room. This was indeed a dream team of brilliant and respected minds, and I was honored to be in their presence. Board members discussed and debated the merits of changing the name 'Chronic Fatigue Syndrome' - broadly considered by patients and the majority of CFS researchers and clinicians as hurtful. They carefully weighed the negative consequences of a change versus possible benefits. There was little conversation regarding the pejorative nature of the current name, and the group quickly addressed the appropriateness of an alternative name. In particular, the board considered two issues. One was the vast amount of research that has already been published using the name 'Chronic Fatigue Syndrome.' The other was the question of timing, especially in light of the extensive effort the CDC is presently exerting to promote recognition and education of the disease via its $4 million advertising campaign. The board members got down to making some tough calls - a strong theme being science versus social injustice - and reached a consensus decision that the name should be changed. The particulars of their decision and rationale will be issued in a written statement and will be released on www.ImmuneSupport.com in the future. Interestingly, the board of directors of the IACFS voted to change the name of their organization to the IACFS-ME - though the decision will depend on the results of a vote by their general membership. Your patient advocate, Rich Carson ProHealth Founder and CFS Patient PS. A special thanks to Marly Silverman of PANDORA, who masterfully organized the IACFS professional and patient conferences. Both conferences set attendance records with participation, enthusiasm, and hope at an all-time high. ProHealth was proud to be a sponsor of both. Features The Role of Infection in Initiating ME/CFS It's a reasonable guess that 75 percent of all persons with ME/CFS were previously healthy people who developed an infection and then never got better, says Dr. David Bell, MD, an internationally recognized CFS expert. "But does the infection that starts ME/CFS go away after initiating a process - a 'hit and run' onset - or is the illness due to a persisting infection?"   more Eagerly Awaited Next Step in Valganciclovir Study Launched Stanford professor Jose G. Montoya, MD, is now recruiting for the next step in his study of the anti-viral drug valganciclovir as a therapy for one potential subset of CFS patients with "virus-induced central nervous system dysfunction." Why all the excitement?   more Expert Insights What FM, CFS & Multiple Chemical Sensitivities Have in Common This concise summary of the criteria for diagnosing CFS, FM, and MCS points out their overlaps - and differences. Dr. Alison C. Bested, MD, a noted specialist in these chronic multi-system illnesses, explains her clinic's "weed and seed" approach to treatment.*   more Pacing for ME/CFS: The Facts What's pacing? It is an evidence-based activity "strategy that will limit the number and severity of relapses and avoid at least some of the complications of inactivity," says Dutch expert Dr. Ellen Goudsmit. "Thousands of patients have found it useful for many years. And above all, it is unlikely to cause harm!"   more Science Update Cranial Electrotherapy Stimulation: Research Points to Quality of Life Improvements without Drugs Cranial electrotherapy stimulation - also known as tDCS - delivers minute amounts of current to the head via a hand-held device sold by prescription in the U.S. Now, "a wide body of research suggests the technique effectively treats insomnia, depression, and anxiety (the only FDA approved uses)... and shows promise for..."*   more Clinical Trial News Phase III Trial of Omega-3 Essential Fatty Acids & Depression Following a trial of EPA now being written up, the next step, still recruiting, is "Safety and Effectiveness of Omega-3 Fatty Acids, EPA Versus DHA, for the Treatment of Major Depression."   more CFS Research Abstracts CFS Reports from 2006 HHV-6 & 7 Conference Following are abstracts of selected articles dealing with CFS from a 120-page issue of the Journal of Clinical Virology, titled Papers and Abstracts of the 5th International Conference on HHV-6 & 7, 1-3 May 2006, Barcelona, Spain. The publication was made possible with funding from the HHV-6 Foundation. Review of Ampligen® trials for CFS Trial of valganciclovir (Valcyte®) for viral-induced CFS HHV-6 may trigger and perpetuate CFS HHV-6 & 7 implicated in CFS pathogenesis HHV-6 implicated in CFS & MS Coagulation disorders in patients with CFS, HHV-6 Other New Abstracts Twin study finds brain scan differentiates for CFS High co-occurrence rate for CFS, IBS, other syndromes Japanese work to crack CNS mechanisms of fatigue Letters From Our Readers      International Viewpoints ME is More Suitable Dental Amalgam Removal Health System Shortcomings Note Diabetes Before Insulin How To Help Others? Support & Direction - Online      Q & A Session Access to Journal Articles Info on HHV-CFS Links? Relapsing-Remitting MS Looking For a Doctor Text-Only Newsletter How To Order? Please share your thoughts with us! Weekly Inspiration Some days even my lucky rocketship underpants won't help. - Calvin and Hobbes Finding Humor Those of us with chronic pain have ended up in some compromising and embarrassing situations in the past, and most likely we will do so in the future. If we won't have a sense of humor today, don't worry, we will have time to work on one. Today, our greatest roadblock to a sense of humor will be our pride and perfectionism. Most of us want to do everything perfectly and we certainly don't want to look foolish doing it. For us that's almost impossible. We'll never be perfect, and having chronic pain, you can bet we will be embarrassed from time to time. Today is our day to find some humor with our pain. From Living With Chronic Pain One Day At A Time, by Mark Allan Zabawa About ImmuneSupport.com Published by ProHealth, Inc., ImmuneSupport.com is the Web's largest resource for Fibromyalgia and Chronic Fatigue Syndrome. Since 1988, ProHealth has raised and donated over 2.5 million dollars to CFS and FM research and advocacy groups seeking a cure. We believe in "commerce with compassion." Every purchase made at ImmuneSupport.com funds research - as does every purchase made from ProHealth's Health Resource catalog. Visit ImmuneSupport.com If you have any comments, suggestions or ideas, please let us know. Include your full name if you agree that we might share your letter with other readers. Send Us Your Feedback
* Note: This article first appeared in last week's FM Edition of CFS & FM Treatment & Research News (Jan 10, 2006)