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WELCOME TO Chronic Fatigue Research France, INC. NEWSLETTER OUR MISSION: Chronic Fatigue Research France Inc. is a non-profit organization maintained by sufferers of Fibromyalgia and Chronic Fatigue Syndrome. Our mission is to improve the quality of life for fellow sufferers, while increasing public, governmental and medical awareness of these diseases, through education. *************************************************************** A CHAT WITH THE EDITOR: The members of Chronic Fatigue Research France, Inc. join the nation in offering our heartfelt sympathy to the families and loved ones of those that lost their lives during the attack on the United States. We are deeply saddened by these events and pray that the nation can find strength in this time of adversity and pull together to become a united force. Although many have probably seen this, I believe the editorial from Canada merits repeating: TRIBUTE TO AMERICA Also for those not aware: To show those terrorists that we Americans stick May peace ring throughout our land this week and spread out to encompass the world as a whole. Michelle, Editor If anyone would like a copy of the last issue, please email M32764@aol.com and put "last issue" in the Subject line. Thank you. *************************************************************** Chronic Fatigue Research France, Inc. Featured Pages: News Page Related Illnesses NMH Sleep Disorders Medicine Assistance Programs ********************************************************************** You can find a convenient link to subscribe at our site. Chronic Fatigue Research France, Inc. ********************************************************************** Jan, at Painpal48@aol.com , is willing to listen and offer you support. Simply drop her a line and she will respond. She is a compassionate, caring woman who has suffered with the ravages of these diseases. If you need her, she is there for you. ********************************************************************** ** Advanced Techniques For Overcoming CFS, FMS and GWS This web site is dedicated to helping people suffering from: * Chronic Fatigue Syndrome (CFS) This site is unique in that it provides a treatment approach for battling these illnesses. http://www.beatcfsandfms.org
**Chronic Pain In America: Roadblocks To Relief Summary of Findings: Parameters Of Moderate To Severe Chronic Pain Chronic pain sufferers have a serious health problem. The majority have pain that is more likely to be severe or very severe rather than moderate and is the type that flares up frequently; they had their pain for many years and feel their pain on average 6 out of 7 days a week. http://ampainsoc.org/whatsnew/summary1_road.htm
**Can Surgery Cure Chronic Fatigue? Neurosurgery May Help Some Chronic Fatigue Syndrome and Fibromyalgia Sufferers Dr. Tim Johnson shares a medical breakthrough: Many people who are diagnosed with chronic fatigue syndrome may in fact be able to have their condition corrected by surgery. http://abcnews.go.com/sections/living/DrJohnson/drjohnson_3.html
**What Treatment Seems Most Effective in Treatment of Fibromyalgia Interesting article discussing many of the treatments currently used. http://www.healthy.net/asp/templates/article.asp?PageType=Article&ID=590
**Neurochemical Substance P Key to Understanding Pain Process http://go1.warp9ems.com/go.pl?tu=3585297-309
********************************************************************** Research conducted by Dr. David Berg and others at Hemex Laboratories1 has found hypercoagulation to be a factor in many patients with chronic fatigue syndrome (CFS), fibromyalgia (FM), myofascial pain syndrome (MPS), and other disorders such as osteonecrosis (bone loss due to inadequate blood supply), and fetal loss. http://www.sonic.net/~melissk/hypercoagulation.html *~*~*~*~*~*~*~*~*~*~*~*~*~*~*~* Immune System Activation of Coagulation Chronic Illnesses due to a coagulation protein defect. The model proposes that a majority of individuals diagnosed as Chronic Illnesses, based on clinical criteria, may be potentially defined as AntiPhospholipid Antibody Syndrome (APS) with the endothelial cell (EC) as the disease target. http://www.hemex.com/cfs/paradigm_shift.html *~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~* Hemex Chronic Fatigue Syndrome / Fibromyalgia Information Center This site includes many publications on Hypercoagulation and FM/CFS. http://www.hemex.com/cfs/main.html *~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~* The results of this thickened blood are: When fibrin coats the walls of the capillaries, nutrient and oxygen delivery to muscle, nerve, bone and organ tissue is compromised. The fibrin coating the capillaries and producing thick blood can make virii and bacteria less accessible to treatment. Thicker blood is harder to pump. By depriving the gut of proper nourishment, hypercoagulation may be a major factor in IBS. If the bowel is deprived of blood, cells will die too rapidly. The endothelial cells lining the capillaries are the source of heparans, the body's natural blood thinners. When fibrin coats these cells, the heparans cannot be released, reducing the body's ability to dissolve the fibrin. http://www.digitalnaturopath.com/cond/C546009.html ********************************************************************** Author Laura Hillenbrand, who wrote “Seabiscuit: An American Legend”, is an unlikely champion. She suffers from chronic fatigue syndrome, a disease that made writing the book a grueling day-by-day marathon. But together, she and the once-scrappy thoroughbred created an unexpected bookselling phenomenon. Read more about this wonderful story and this amazing author: http://abcnews.go.com/sections/GMA/GoodMorningAmerica/GMA010824Chronic_fatigue_syndrome.html
********************************************************************** Speeding? ---------------------------------- A woman was driving down the highway about 75 miles an Instead of slowing down, she picked up speed. When she looked back again, their were two motorcycles Suddenly, she spotted a gas station looming ahead. She The three cops were standing there waiting for her. Without ********************************************************************* Fibromyalgia Where:
Christus St. Michaels Rehab Hospital at 903-614-2000 cost will include: Handouts, Refreshments the balance of proceeds will go to ********************************************************************** **Editor’s Note: We are fortunate to have Susan as a member of Chronic Fatigue Research France, Inc.. I would like to take this opportunity to thank her for sharing her experiences with us. I have been ill since 1980 with Chronic fatigue Syndrome and Neurally Mediated Hypotension. In May, I went to see the doctor who took over the practice from my previous immunology and infectious disease specialist, who treated me for Chronic Fatigue Syndrome since 1990. He suggested a new medicine that was showing promise in people with extreme fatigue, in cases such as Multiple Sclerosis and Chronic Fatigue Syndrome. This medicine is called Provigil, and was originally created to treat narcolepsy. Provigil (modifinil) promotes daytime wakefulness, targeting on the area of the brain that controls wakefulness, not the whole system as with amphetamines. My doctor gave me a coupon for seven free pills and a prescription for a two week supply of 200mg Provigil tablets, one a day. He warned me that it was an expensive medicine and that the insurance might not cover it, but that within two weeks I should be able to tell if it would help or not. Being that this was the first new hope in several years, I decided to give it a try. I could tell within an hour of taking the medicine that it was in my system. The first week on this medicine was unpleasant for me. I felt wired, like I'd consumed a case of caffeinated soda, and I hate that feeling. I had trouble falling asleep the first few nights, but that symptom eased as I became adjusted to the medicine. I lost my appetite, which for me was a big plus, because I've been gaining weight slowly over the last several years and had at least 20 extra pounds to lose. This effect also decreased as I became adjusted to the medicine, but in the first 2 months I lost about 13 pounds and have since kept it off without trying to diet. I had some headaches from time to time in the first two weeks, but those also passed. The main problem was that with this 'wired' feeling, the first several nights I couldn't sleep, and I had an overwhelming urge to keep moving. As those with this syndrome know, this can lead to overdoing and a crash, which happened to me. At the two-week mark, I was in the crash stage, and felt that I couldn't accurately tell if the medicine was going to be helpful. The doctor agreed to an additional two-week trial time. Of course my insurance company was not helpful and denied covering this medication, so I had to pay out of pocket. At my pharmacy, a month's supply of 200 mg tablets, 1 a day, 30 pills total was $170. As I came out of the crash and adjusted to the medicine, I could tell I was having a higher level of daytime function than I had previously. I was able to do a bit more, although I still have to be careful not to overdo. Most importantly, with the added activity, I was no longer crashing and paying dearly for each thing I was doing. I still can crash if I do more, but the 'danger zone' is a bit farther away than it used to be. I would have to estimate a 40% improvement in my activity level, with 100% being what it would take to get back to 'normal'. I think even 40% is a significant improvement and worth it for me to stay on this medicine. This medicine is not a cure for chronic fatigue, nor does it help my Neurally Mediated Hypotension, but it does offer me a significant measure of improved quality of life, for which I am very grateful. With the help of the people at the Provigil assistance program and my specialist and family physician, we were able, after several appeals, to get the insurance company to approve the payment for this medicine. (Special thanks to Alvin at Provigil for sticking with my case and following through til the end, and calling to check on me.) I had to pay some of the refills out of pocket, and the Provigil program sent more of the seven pill coupons to me through my family doctor. I will still have to pursue reimbursement through the insurance company. I do not know if this medicine would work for everyone. There are currently studies being done on the effectiveness of this medicine as a treatment for CFS, towards getting the FDA to approve its usage as a CFS treatment. I do know that it is helping me enough to want to stay on it. I am no longer having any trouble with side effects. The side effects I had trouble with diminished over the first 4-6 weeks, with the worst of the 'wired' feeling passing after two weeks. For anyone with CFS trying this medicine, I highly suggest that if you experience that 'wired' side effect that you have someone to watch out for you overdoing so that you don't have to crash afterwards. For more information, visit the Provigil website at www.provigil.com Welcome To PROVIGIL.com . http://www.provigil.com *~*~*~*~*~*~*~*~*~*~*~*~*~*~* For more information visit the following sites: Provigil Reduces Fatigue Consumer Information Study: Modafinil vs. Amphetamines Provigil: What Do You Think? Beat CFS and FMS.com ********************************************************************** Thank you Anne-Marie Vidal for bringing this information to our attention. Subject: Pain Survey Please Complete Before Sept 15th The information gathered from this survey is going to be used at the September 15th meeting where the FDA intends to re-evaluate its present policy on the use of opiates in the treatment of non-malignant, chronic, intractable pain. In other words, the FDA is meeting to discuss whether or not chronic pain patients, will be allowed to take long-term opiate pain medicine for anything other than cancer! Since the FDA has asked for public input, we are circulating this questionnaire and asking for everyone's participation. The information we gather from this survey will be used to make a statistical database that presently does not exist on this issue, but could be very helpful in the policy-making process of the future. We will be sending a representative to attend this crucial meeting on Sept 15th, to make a presentation of THIS survey's findings! P.S. This survey applies only to those who are currently taking opioid medications for chronic pain. http://www.be-painfree.com/ ********************************************************************** Dr. Julian Stewart is seeking adolescents with CFS ages 13-19 for a new If you know of any adolescents with CFS that might be interested in To learn more about the study: http://www.nymc.edu/fhp/centers/syncope/Circulatory%20Dysfunction%20in%20the%20Chronic%20Fatigue%20Syndrome.htm You can also contact Dr. Stewart directly at: Center Director Research Professor of Physiology Telephone: 914-594-4370 E-mail: ********************************************************************** The Founders of Chronic Fatigue Research France, Inc. would like to thank those of you who have supported us so graciously with your gifts of help to keep the site online and to help us reach our goal to bring up-to-date information to all who need it. We strive to educate the public, the medical community and the new sufferers of these diseases by offering information, chat rooms and message boards to bring us all together. Thank you from the bottom of our hearts!! Anyone wishing to share in the support of our endeavors may send a tax-deductible donation to the following: Chronic Fatigue Research France, Inc. Kathy Tatum ******************************************************* OUR WORLD IS BROUGHT TO YOU BY: -President – Kathy, ********************************************************************** <><><><> God Bless and Best Wishes <><><><> Disclaimer: The list owner cannot accept any form of responsibility, legal or otherwise, for the opinions and information presented on this mailing list. All information should be thoroughly examined by a qualified physician, familiar with your health care, prior to commencing any new treatments.
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Copyright©2002 Our FM/CFIDS World, Organization. All rights reserved. The ongoing business of Chronic Fatigue Research France, Inc. is possible by the public in monetary donations and website sponsorship. Our bills are very few, thanks to the website costs being donated, therefore most of our donations will be sent to research for Fibromyalgia and CFIDS cause, treatment and cure. Web site hosting by:
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Copyright©2005 Our FM/CFIDS World, Organization. All rights reserved. The ongoing business of Chronic Fatigue Research France, Inc. is possible by the public in monetary donations and website sponsorship. Our bills are very few, therefore most of our donations will be sent to aide in the awareness, and research for Fibromyalgia and CFIDS cause, treatment and cure. |
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