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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: "Ya gotta do what ya gotta do." --Sylvester Stallone
I find myself saying this to people often. When I am asked things like how I manage to deal with so many medications, or how I do the things I do, or why I do certain other things. The answer always comes down to those simple words. You do what you have to do to survive. It usually leaves the person asking the question or making the comment speechless. For that brief moment, they realize the impact of this disease. They may even say a small blessing that they are healthy and don’t have to tackle such problems. Either way, it makes a chilling point. For us, it’s a statement declaring our determination to make it through another day. Like it or not, sometimes we just have to do it, or not do it, to move forward. Here’s wishing your “gotta do’s” are easy ones,
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. ***************************************************************
**New things are on the horizon! Look for special announcements from Our World on the launch of our new site and an upcoming silent auction. We are spreading our wings and soaring to new heights. We hope you will join us in our new adventure. ********************************************************************** You can find a convenient link to subscribe at our site. Chronic Fatigue Research France, Inc. ********************************************************************** News From Brooklyn I also want to thank those who have sent in donations, they are much appreciated and will go to further our education campaign. Spring has finally sprung here in NY. It has been about 32 degrees the past two days with wind chills 20 to 47 miles per hour. I tried to get out but got blown back in, what ever I had to do will wait until the gales stop blowing or I will likely do a Mary Poppins minus the umbrella of course. I saw my PCP this past Wednesday and first thing he did was write scripts for all my allergies. They are expecting a really early, nasty allergy season here because it has been so warm and dry. I am also taking out stock in the PUFFS company. My fellow allergy suffers will seriously understand that comment. Once again I ask that you keep our fellow patients in your thoughts...may their procedures be successful and their recoveries quick. Wishing All Pain Free Days and Restful Nights ~*~*~*~*~*~*~*~*~*~*~ 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. ********************************************************************** ** Does Fibromyalgia Run in Families? Researchers have found that fibromyalgia is more common among the siblings, parents and children of those who have fibromyalgia than in the general population. But their research didn't clear up whether this phenomenon was the result of nature or nurture. http://www.arthritis.org/resources/news/news_fibromyalgia.asp
** Serotonin in Chronic Fatigue Syndrome & Fibromyalgia While the picture is far from clear, serotonin metabolism appears to play a role in both chronic fatigue syndrome (CFS) and fibromyalgia -- although the nature of that role appears to differ. http://www.immunesupport.com/library/showarticle.cfm/id/3420
**Chronic Fatigue Syndrome and Its Herbal Treatment A discussion of retro-virus and herbal treatments for CFS http://www.immunesupport.com/library/showarticle.cfm/id/3418
** "Fibromyalgia: A prominent feature in patients with musculoskeletal problems in chronic hepatitis C A Portland, Ore. study suggests hepatitis C may trigger fibromyalgia. The study is the first to show a link between the two illnesses. http://www.geocities.com/HotSprings/Spa/7563/fibromya03.html
**Yoga For Your Pain From 25 percent to 30 percent of all Americans suffer from chronic pain. Most turn to medication for relief. A new study shows there is a more natural way to find relief. In fact, your body may already have what it takes to be pain-free. https://search.ivanhoe.com/channels/p_channelstory.cfm?storyid=2988&channelid=CHAN-100000
********************************************************************** Dr. Teitelbaum Lecture tape now available from NYSN ********************************************************************** All I Need to Know I Learned From The Easter Bunny Walk softly and carry a big carrot Everyone needs a friend who is all ears There's no such thing as too much candy All work and no play can make you a basket case A cute little tail attracts a lot of attention Everyone is entitled to a bad hare day Let happy thoughts multiply like rabbits Some body parts should be floppy Keep your paws off other people's jellybeans Good things come in small, sugar-coated packages The grass is always greener in someone else's basket An Easter bonnet can tame even the wildest hare To show your true colors you have to come out of your shell The best things in life are still sweet and gooey ********************************************************************** Are Electrolyte Drinks for You? Clinical Studies have established that the average CFIDS patient has only 70% of normal blood volume. This means there is less blood in the body than there should be. The symptoms of low blood volume may include anxiety attacks, cold hands and feet, dry eyes, light-headedness when standing up, and fatigue. And some believe it may even cause mitral value problems. In addition, studies on fibromyalgia have shown evidence of dehydration which causes low blood pressure as well as electrolyte imbalances. The theory of low blood volume is that there is a faulty feedback mechanism in the brain that does not alert the body that it needs more water. When fluid levels drop, the brain produces more adrenaline so the heart has to pump more blood to compensate for this. Dr. Bell hypothesized that the low blood volume could account for the prevalence of orthostatic intolerance (worsened symptoms upon standing) in CFIDS, because the limited amount of blood tended to pool in the legs and feet, with a corresponding drop in the amount available to the brain. The result? Those awful sensations of heaviness…like you are wearing lead boots. Evidence is mounting, this is a core problem in CFIDS, as well as reduced cerebral blood flow. To counteract the symptoms of low blood volume many CFS/FMS specialists including: Cheney, Bell, and Streeten, recommend drinking one quart of an electrolyte solution daily on an empty stomach. There are more medications to treat orthostatic intolerance, but if drinking electrolyte liquids help part of the problem, it is a subject worth exploring with your physician. Why electrolytes? Electrolytes are salts. FMS/CFS patients are often low in salt and often that lucky part of the population that can enjoy a high salt diet. Your physician can perform electrolyte testing to make sure you are in this percentage group. If you are, electrolyte drinks will improve the oxygen carrying capacity of your blood and give you relief from fatigue and muscle pain. When shopping for an electrolyte drink, don’t grab the first bottle of Gatorade! Shop for quality and look for sugar free and naturally flavored powders that are easily absorbed. The ingredient glucose is an acceptable sugar because it allows all ingredients to be more easily absorbed through the stomach lining. Your ingredients should look something like this: Glucose, citric acid, potassium chloride, sodium bicarbonate, dipotassium phosphate, sodium chloride, magnesium gluconate, calcium gluconate. Some flavors may contain magnesium and calcium “citrates” in place of the gluconates. Stomach buffers such as: Citric acid, sodium bicarbonate and dipotassium phosphate are a plus. Sometimes ingredients may even include ascorbic acid (vitamin C).
********************************************************************** Please pass this on! Dear Friends, We at Invisible No More-FMS-CFS/CFIDS-MCS-MPS are continuing preparations for the Walk for Awareness in Washington, DC. Press coverage is needed and as you know press coverage of these invisible disabilities is almost nonexistent. We are targeting the View to receive letters and we are asking that they cover the Walk and have INMFCM president Tracy Loeffler as a guest on their show. We don't have to remind you that we have to raise awareness of these disorders, the fact that men and children are also afflicted is almost ignored. Let's make our best effort to move them from the lowest funded research programs at the National Institute of Health. Additionally, we need to remind people that our lives were productive and active prior to developing these illnesses. These illnesses impact not only the individual that has them but the family she lives with. At the link below you can e-mail each of the moderators of the View. PC Hint: type in your first message; highlight it; and press control +C. This way the message will be in memory when you begin your second message, simply press control+V. http://abc.abcnews.go.com/theview/main.html Healing Hugs, Board Member, Invisible No More http://www.geocities.com/tlloeffler/fibrofight13.html
********************************************************************** **Human Herpesvirus 6 (HHV-6) and Chronic Fatigue Syndrome Human Herpesvirus 6 (HHV-6) is one of eight known members of the human herpesvirus family. The virus, which was discovered in 1986 at the NCI, infects cells of the immune and central nervous system. http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/3407
**About HHV-6 What is Human Herpesvirus 6 (HHV-6)? Fundamentals of HHV-6 Primary HHV-6 Infection: Exanthem Subitum Treatment: Antiviral Drugs http://www.viracor.com/HHV6/index.html
**HHV-6: "The Virus Within" http://chronicfatigue.about.com/library/weekly/aa032900a.htm
**Frequent HHV-6 reactivation in multiple sclerosis (MS) and chronic fatigue syndrome (CFS) patients. http://listserv.nodak.edu/scripts/wa.exe?A2=ind0003E&L=co-cure&P=R635
**HHV-6 and Chronic Fatigue Syndrome http://www.cfs.inform.dk/Virus/hhv6cfs.html
********************************************************************* 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. ********************************************************************** -President – Kathy, ********************************************************************** <><><><> God Bless and Best Wishes <><><><> ************All of us at FM/CFS World, Inc.*********
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.
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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