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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 only disability in life is a bad attitude.” --Scott Hamilton I find myself falling into the bad attitude trap from time to time. I think it is unavoidable. Things like “Why me?” and “I can’t take this anymore!” seem to keep popping into my head. While I am dwelling on these thoughts, I’m not helping myself. I’m not trying to find a way to make things better. It makes me think I am less than I really am and that hope for the future is dismal. Harboring such attitudes undermines the positives I do have in my life, and this is unacceptable. We must keep the “I can” and “this too shall pass” thoughts fresh in our minds. We must accept that bad days are going to hit us, and take them in stride. We need to stay as positive as we can, if we want to be the best that we can. Until we meet again, may only positive thoughts dwell within you.
Michelle, Editor
Newsletter archives are available at our web site. Simply follow the links for the 2001 or 2002 archived issues.
********************************************************************** The list service that delivers this newsletter to you is not always reliable. On several occasions readers have remarked that they have not received particular issues. For this reason all the newsletters are archived on our web site. If you think you have missed an issue or two, you can find them in their entirety under Newsletters ’02. We apologize for the inconvenience and thank you for your patience. *************************************************************** Chronic Fatigue Research France, Inc.
New features at Chronic Fatigue Research France: Reflections – a FMily forum for our talented writers to show off their works. There are currently some wonderful works on display already. Simply click on the Reflections page, or find them in the Table of Contents. If you have a piece you would like to submit for inclusion, please forward it to Michelle at . Support Groups – we are now constructing informational pages for local support groups to announce their meetings. They are organized by state so that visitors will be able to find a group in their area easier. You can find the listings under the Support Groups page, or in the Table of Contents. If you would like to have your group added, simply forward your information to Michelle at Scott Davis, Disability Attorney – Mr. Davis has graciously allowed us to put his articles on our site. There are several up now, and more will be forthcoming in the near future. Mr. Davis is also available via email and telephone to assist you with your disability claim. He has a very high success rate in obtaining Social Security Disability benefits for his clients. Look for him on the Disability Attorney pages. Awareness Day speeches – Paula Carnes and Anne-Marie Vidal were kind enough to give us copies of the speeches they prepared for the Awareness Day conference. Both speeches, in their entirety have been added to our Awareness Walk 2002 pages. There are also new pictures on the site for your enjoyment. *~*~*~*~*~*~*~*~*~* We would like to put together information for men with FM/CFIDS. If you have any input, or suggestions, please feel free to forward them. We are anxious to hear from you.
********************************************************************** 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. ********************************************************************** We are honored to announce the addition of Anne-Marie Vidal to the Board of Directors of Chronic Fatigue Research France, Inc., as our new Advocacy and Awareness Coordinator. Anne-Marie is a familiar name to most of you. Her writings and articles have appeared in our newsletter periodically for quite some time. What you may not know, is how diligently she works behind the scenes when it comes to Advocacy and Awareness issues. She is a shining beacon for all of us suffering with these diseases. She researches, she writes, she listens, she acts. Her wisdom, her compassion, and her spunk will make her an invaluable member of our team. We are thrilled to welcome her! *~*~*~*~*~*~*~*~*~*~*~*~* We are also pleased to announce that Kathy Tatum has become our Political Liaison. She will be coordinating the efforts of our new lobbyist who will be working to promote awareness issues in Washington, D.C. We hope to have some exciting news for you as things progress. We wish them much success in these new endeavors since they will benefit all of us. ********************************************************************** **The backlog of pending claims for disability benefits is nearing crisis levels and the Social Security Administration ( news - web sites)'s repeated attempts to overhaul the system have failed, a congressional agency said Tuesday. "Decisions on appealed claims are taking longer to make, fewer decisions are being made," said Robert E. Robertson, a director for the General Accounting Office ( news - web sites), the investigative arm of Congress. http://story.news.yahoo.com/news?tmpl=story&cid=536&ncid=703&e=6&u=/ap/20020611/ap_on_go_ca_st_pe/social_securit y_1
**BadBackClinic.com – contains information on self-help exercises. Includes sitting, standing and floor exercises for different ability levels. http://www.badbackclinic.com/
**University of Michigan Fybromyalgia Study Most people who suffer from fybromyalgia have heard at one time or another that it's all in their head. Well, a University of Michigan researcher has proof it is in their head, but you can see it, and it is very real. http://www.detnow.com/healthyliving/0206071701h.html
** “Paul Cheney, M.D., on SSRIs and Stimulants for Chronic Fatigue Syndrome: Frying the Brain?” Dr. Cheney recently came across some information regarding the dangers of Selective Serotonin Reuptake Inhibitors (SSRIs), such as Prozac, Zoloft and Paxil, and stimulants like Ritalin and Provigil. http://www.immunesupport.com/library/showarticle.cfm/id/3618
**Abstract: Pathogenic mechanisms of fibromyalgia Though the most prominent symptom of fibromyalgia is pain in defined regions of the locomotor system, the numerous other somatoform and psychological disorders suppose a common primary disturbance which is considered to originate within higher levels of the central nervous system. http://www.immunesupport.com/library/showarticle.cfm/id/3621
**Study Says COX-2 Drugs May Not be Worth the Extra Money New studies challenge the cost-effectiveness of COX-2 drugs compared to traditional non-steroidal anti-inflammatory (NSAIDs), such as ibuprofen and naproxen, in treating arthritis, acute pain and other disorders. http://www.healthscout.com/template.asp?page=newsdetail&ap=1&id=507452
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Walking up to a department store's fabric counter, a pretty girl asked, "I want to buy this material for a new dress. How much does it cost?" "Only one kiss per yard, " replied the smirking male clerk. "That's fine," replied the girl. "I'll take ten yards." With expectation and anticipation written all over his face, the clerk quickly measured out and wrapped the cloth, then teasingly held it out. The girl snapped up the package and pointed to a little old man standing beside her. "Grandpa will pay the bill," she said as she smiled.
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Stop and Smell The Roses Stop and smell the roses? We have all heard this phrase but what does it really mean? Surely it doesn't actually refer to smelling roses does it? Life is such a hurried rush, going to and fro. Work, home, hobbies, bed and do it all over again. One day you stop long enough to ask, "Where has the time gone?" but it is only a fleeting thought before you jump back onto the fast track of life. Is that really living though? I used to think it was. Now add an illness to that, one where no one else can see that you are ill. In invisible illness so to speak. You are still in life's fast track but working harder to keep up, even a steady pace is difficult. You have to though, you struggle but feel yourself falling behind. Why do you fight it so? Because society dictates what you do is who you are. Where you are in life, in regards to career, family relationships, is what society views your worth by. Giving up or giving in is not in your vocabulary. I know, because a year ago I gave up and gave in. At least that is what I felt like I was doing at the time. I gave in to the pain, I gave up a nursing career I loved with all my heart. In my mind I had failed! I depended on welfare as I fought for disability (and won). But the depression and self- loathing grew heavy as well. I had no self-esteem. I felt I had let society down. And then it happened. Quite by accident really, but happen it did. I was grocery shopping one day and walked by the florist section. I usually just ignore it and go get what I need. But this day was different. I felt an overwhelming urge to… you guessed it… stop and smell the roses. So I did, and not only did I stop to smell the roses but I left the store with my groceries and a bundle of bright yellow and red roses. My heart was a little lighter that day. The fast track wasn't quite as important. Suddenly other things also began to come into view. Things that while on that fast track I forgot to stop and enjoy. Those nights I couldn't sleep, I suddenly felt like sitting on my front steps wrapped in a blanket watching the moon and stars in the still of the night. Or sitting by the window to watch the sun come up in all its glory. Amazing how many years had passed by without my ever seeing a sunrise. On days when the pain is bad but I am going stir crazy I sometimes have an urge to walk across the street to the park and sit and watch the kids at play. There is something magical in the expression of a kid’s face as they soar to new heights on the swings. So magical in fact that often I am compelled to join in the fun. I don't fly as high anymore, and I certainly don't jump from the swing at dizzying heights. But…. its enough to just fly for a few minutes. And I come home with feeling better. Did it take my pain away? NO, but it let me for just a moment be a kid again in all my childhood daring and freedom. In the fast track, I as a grown up with guidelines of what grown ups do and don't do to follow. Swinging was not included. (smile) You know, I don't miss the fast track anymore. In fact I think I had it all wrong from the start. Being disabled has allowed me to relearn to love the sound of a child’s giggle, the sunsets and sunrises. It has allowed me to re find me, to find inner peace, and in doing so it also allowed me to find love. I would love a cure, for all of us. And would love more than anything to be able to go back to work too. But, if/when that day ever happens, I won't be returning to the fast track for the roses smell much too sweet to ever lose again.
********************************************************************** It refers to: Pain from stimuli which are not normally painful http://www.painonline.org/allo.htm
**Desensitization http://members.aol.com/DKEGA/Allodynia.html
**Allodynia Information http://home.ptd.net/~paulbarb/allodynia.htm
**Specific Information on Hyperalgesia and Allodynia with diagrams http://www.centef.ch/pain/Pain_pathways__overview/Pain_pathways_-_Somatic_nocice/Receptors_sensitization/receptors_sensitization.html *~*~*~*~*~*~*~*~*~*~*~*~*~*~* Additional informational links can be found on our web site under Related Illnesses
********************************************************************** I am writing this letter to make sufferers of Fibromyalgia and Myalgic Action Network) and Health Minister Anne McLellan. The meeting was set up to discuss some very important issues concerning these illnesses and they are asking for our help. We have been asked to email or snail mail Ms. McLellan to tell her how these illnesses affect us and our loved ones and to re-iterate how very important Lydia Neilson's agenda is to Canadians who suffer with these illnesses This is a very important opportunity that we have here so we musn't let it pass us by! Please, I urge you, if you have been diagnosed with Myalgic Encephalomyelitis and/or Fibromyalgia write an email or send a letter to the Health Minister as soon as possible. We may not get this opportunity again. If you belong to a local support group make sure that they're aware of it. If you belong to mailing lists, pass this information along. Canadian doctors don't even have Guidelines or Diagnostic Criteria to treat and diagnose patients who have these illnesses and those doctors who do treat us have patient overloads as it is. We need to speak up and we need her to hear that we need these NOW! Again, this letter must be sent as soon as possible as the meeting date is June 14, 2002. The agenda that has been laid out for that day is as follows:
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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