For Your Information
CFIDS/FMS News
Chronic Fatigue and Fibromyalgia Support Group of South West Florida
March/April 2005
Meeting Third Saturday of the month, 10:30AM to Noon at the Cape Coral Hospital,
In the New Café, 636 Del Prado Boulevard, Cape Coral.
January - Round table discussion lead by a licensed counselor
February - Round table discussion lead by a licensed counselor
Handouts on Chronic Fatigue and Fibromyalgia are available at every meeting. A therapist leads round table discussion. Information and support is shared by all. Perfume and scent free due to sensitivities. Programs announced as available. Newsletters are published every other month.
If you received this newsletter in the mail it means we do not have your e-mail address!
Awareness Day is May 12th - Make a Difference!
Roxy Barber
223 Utah Ave.
Fort Myers, FL 33905
It is not the number of breaths you take that make a life,
It is the moments that take your breath away.
Letter from the Editor
No matter how much I may imagine I am getting smarter as I get older, I still try to do too much, and most of it not really necessary! This is a hard lesson to learn. This time it was not the newsletter, but other life happenings that got me distracted and I put off the newsletter until the last minute. That left it so I could not conscionably take advantage of the generously offered assistance, that I so ungraciously begged for. My apologies to both Judy Sailer and Ken Schneider who offered to assist. I much appreciate the offer and we will be starting the next newsletter immediately!!!!!
I know this is something a lot of us struggle with, asking for help, using help when it is offered and learning to let go of "the small stuff". Any one who has a handle on this issue is encouraged to write an article for the next newsletter! Or call and talk and I will write for you.
Love and hope for all
Roxy Barber
693-7252
Webeinflorida@juno.com
Awareness Day MAY 12, 2005
May 12, 2005 is CFIDS, FMS Awareness Day! Help spread the word on issues affecting our community.
CFIDS Association of America states "Recent CDC studies document that chronic fatigue and immune dysfunction syndrome (CFIDS) is as disabling as chronic pulmonary disease, osteoarthritis and severe depression, yet CFIDS is among the lowest-funded diseases by the federal government. By joining your voice with others, you can fight more effectively to increase the amount and quality of CFIDS research."
"Plans for Lobby Day 2005 are under way. Make sure your Congressional representatives hear the message about CFIDS — that it is real, it is serious and it warrants increased attention and funding - by participating in this year's event. Newly elected members of Congress, members of funding committees and representatives from your state need to understand the impact CFIDS has on their constituents."
For more information on Lobby Day in Washington D.C. by the CFIDS Association of America, Inc. Please go to their web site www.cfids.org
P.A.N.D.O.R.A. and several other groups in Florida will be sending a group of CFS/FMS patients to Awareness/Lobby Day in Tallahassee Florida to lobby to our state legislature
Right here, right in your own home you can help,
who else will do it if we don't?
Writing to your U.S. Congressman and State Legislature http://www.geocities.com/CapitolHill/4277/govt.html
Contact media http://www.geocities.com/CapitolHill/4277/media.html
Social Security Coalition online petition http://www.petitiononline.com/SSDC/petition.html
The Million Letter Campaign http://www.fms-help.com/letter.htm
If you do not have internet access and would like printed copies of this information please contact me at 693-7252. I will be glad to download, print and mail it to you.
Miami Patient Advocacy Group Making Strides
P.A.N.D.O.R.A. is brand new and the only 501 c 3 organization in Florida whose mission is to address issues for folks with CFS and FMS, as well as GWS, MS and MCS. Created by Marly Coutinho McKibben because we lack a cohesive voice in the state of Florida, P.A.N.D.O.R.A. is good at being partners with larger organizations to promote the issues of our community of suffering. The name stands for Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy. The motto is Built on Hope-Strong on Advocacy-Finding a Cure through Research. The website is www.pandoranet.info and has East Coast specific info for now as well as Awareness Day forms and links, a bookstore linked to Amazon.com with a donation with every purchase, links to related sites. P.AN.D.O.R.A. supports the Chronic Fatgue
Syndrome Center at the University of Miami VA Hospital, Miami, Florida
P.A.N.D.O.R.A is also working to do some fund raising and to enlist the support of the South Florida Congressional Delegation for the establishment of a Neuroendocrineimmune Center of Excellence in South Florida at the University of Miami/VA hospital with Nancy Klimas as a lead CFS researcher. The CFSAC recommended to the Dept. of Heath and Human Services for 5 such centers be established in the US. P.A.N.D.O.R.A wants one to be established here in Florida so we can help Dr. Nancy Klimas fulfill her dream of having a state of the art research facility for the study of Neuroendocrineimmune disorders.
It looks as if they are off to a good start!
Together RX Access Card for Savings on Prescriptions for Uninsured
From: www.CO-CURE.ORG
Date: January 11, 2005
In a statement Tommy G. Thompson, Secretary of Health and Human Services announced the Together Rx Access Card program, launched by ten pharmaceutical leaders coming together with an innovative solution to a complex problem. The uninsured can use this card at their pharmacy to receive savings of 25 to 40 percent on more than 275 brand-name prescription medicines and generic drugs. More information is available by calling 1-800-444-4106 or by visiting www.togetherRxAccess.com.
New Pain Drug?
From: www.CO-CURE.ORG
01-12-2005
Kim Norris, Free Press
Pfizer Inc. has developed a new drug under the brand name Lyrica, for treating nerve pain, with two uses approved by the FDA: the nerve pain associated with diabetic neuropathy and pain that often accompanies shingles. "But because of the way Lyrica works -- through the central nervous system -- it has a potentially broad spectrum of uses, some of which are still in the development stages", Lyrica works "like a blanket to dampen the highly excited nerve endings, that cause not only pain, but also seizures and psychiatric disorders such as anxiety. Hoover said Lyrica could be a potential treatment for the pain associated with fibromyalgia, for which there is no treatment, as well as spinal cord injuries." Lyrica is the next generation drug in the same class as Neurontin
""Based on our data collected in animal and human studies, we expect Lyrica to have a low potential for misuse or abuse," Chambers said. Lyrica could provide a needed shot in the arm to Pfizer, which has lost or is losing its patent monopoly on some of its biggest-selling drugs and dealing with declining sales in its blockbuster arthritis drug Celebrex following the removal of rival product, Vioxx, from the market.”
SEX and us
From: March 2005 CFIDSlink e-news www.cfids.org/cfidslink/2005/sex-cfs.asp
Sex & CFS By Patricia A. Fennell, M.S.W., L.C.S.W
This article addresses many of the issues we face when it comes to dealing with our illness and our sexuality. The author notes that our culture is very conservative, but in contrast, we have a billion-dollar sex industry that puts sex in our awareness constantly. This makes sexuality a complicated subject, chronic illness only adds to the mix.
When a person is chronically ill, the family unit is vulnerable. Relationships are changed and for some, a complete way of life is lost. Pain, exhaustion, lack of energy, inability to hold an erection or lack of orgasm are only some of the physical repercussions. Chemicals released during orgasm can help relieve pain and improve mood, but the adrenaline release may cause exhaustion. There can be many subtle changes in emotional responses and the balance of relationships.
Partners of the chronically ill can feel protective and stop initiating contact for fear of hurting the other person. The role of caretaker can change the power balance in a relationship. The person who is ill often reacts to the extreme physical and emotional changes with a childlike emotional state. Or they can be confused about wanting sex when they haven't contributed to the household. Feeling like a burden, anger, resentment and loss all contribute to these changes in the dynamics of relationships.
The best step one can take to resolving these issues is to talk about them. Explore why one party may be disinterested, self conscious, disappointed. "Often the very act of speaking candidly about fears and concerns is enough to bring acceptance and reassurance, to rebalance the power in the relationship and to allow sexual contact to be resumed."
Fennell suggests, look for windows of opportunity when energy up or symptoms lessened, create rituals that make you feel romantic or sensual, set aside special times for sex, an adult oasis where you are equal partners. Pace yourself also to allow time of recovery of energies if needed. Don't schedule the grocery shopping immediately after romance! There are also products, prescription and natural, that can help with lubrication, sensitivity, desire and response. Discuss it with you doctor and don't take no for an answer. He/she may be just as embarrassed or lacking in knowledge in this area as you! If thinking or talking about these issues is too difficult, talk to a counselor or therapist as an individual or a couple.
If you are beginning a new relationship think about how much disclosure is necessary and appropriate at each stage of the relationship. Do not leave yourself feeling vulnerable and do not overwhelm the other person. Discuss other personal topics to evaluate how comfortable the other person is with sharing. Only you can judge who will make a good partner that can cope with the challenges of your illness. A caring partner will accept your limitations and share the intimacy of facing challenges together.
View your illness as one more thing you need to become accustomed to sexually. It is a necessary step on the journey of being a couple. Sex doesn't have to be a thing of the past!
New Resource Guides for People with Disabilities
http://www.cfids.org/cfidslink/2005/unum.asp
The new resource guides from the Kaiser Family Foundation, offer basic facts about Medicare and Medicaid, with an emphasis on the programs' role for people with disabilities
Navigating Medicare and Medicaid, 2005: A Resource Guide for People with Disabilities, Their Families, and Their Advocates
This guide explains the critical role Medicare and Medicaid have come to play in the lives and the futures of roughly 20 million children, adults, and seniors with disabilities - and gives people with disabilities new information to help them get the most from these programs.
Keeping Medicare and Medicaid When You Work, 2005: A Resource Guide for People with Disabilities, Their Families, and Their Advocates
This guide helps to explain the program rules for Medicare and Medicaid with regard to work. Medicare and Medicaid have come to play important roles in the lives and the futures of roughly 20 million children, adults, and seniors with disabilities - and this guide gives people with disabilities new information to help them get the most from these programs.
Important Notice for UnumProvident Claimants
From: www.CO-Cure.org
UnumProvident, the nation's largest disability insurer, has been under investigation for claim denial. "Unum will pay $15 million in fines and was ordered to reexamine more than 200,000 denied claims dating back to 1997. While some of the previously denied claimants will be contacted by the insurance company via mail, many will receive no notice at all. Furthermore, those that are contacted by Unum may not fully understand their rights or the significance of the notice. Since there is only a short period of time (60 days) to initiate the reopening of claims, it’s important to do so immediately. If you or someone you know had a long-term disability claim denied or terminated by Unum or one of its subsidiaries (Provident Life and Accident Insurance Company, Unum Life Insurance Company of America, the Paul Revere Life Insurance Company, First Unum Life Insurance Company, Provident Life and Casualty Insurance Company), consider beginning the process of reopening your claim either on your own or after seeking professional advice."
CFIDS/Fibromyalgia Self-Help Course On-Line
Announced on Co-Cure:
Date: Fri, 4 Mar 2005
We are currently accepting signups for the Spring session of the CFIDS/Fibromyalgia Self-Help Course. The course, which begins March 28, is an 8-week email discussion group that focuses on practical strategies for managing common problems of CFIDS and fibromyalgia. The cost of the course, which includes a copy of "The CFIDS & Fibromyalgia Self-Help Book," is $25. Visit our website to learn more and to register: www.CFIDSselfhelp.org
Disclaimer
The Chronic Fatigue and Fibromyalgia Syndromes Support Group is a self-help program to present ideas and exchanges with the members. None are to be construed as medical advice. This newsletter does not dispense medical advise not is any endorsement intended. No responsibility will be assumed for any specific medical hypothesis or product, and will assume no responsibility for any treatment or activity undertaken by readers.
Contact
Bonnie Dewar 239/543-2812
Terry Connor 239/945-1247
I wish to donate the enclosed amount to help with the costs of the Cape Coral CFS/FMS group. Any and all donations are appreciated. $________________________________