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| Volume 2, Newsletter #6 |
September 2012 |
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Thank you to our sponsors and donors for helping us keep information free and available for the public. The NFMCPA is a not-for-profit charitable 501c3 organization.Please consider a tax-deductible donation today to continue the advocacy, education, and awareness for our community. |
Sponsor Message
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| Importance of Proper Medication Disposal: Medicine Take-Back Programs
When cleaning out your medicine cabinet, don’t throw unwanted medications in the trash or flush them down the toilet. If you do, you may put your children and the environment at risk.
A recent study reported that more than 71,000 children visit emergency rooms annually for unintentional overdoses of prescription and over-the-counter medicines. One way children obtain these medicines is from improper disposal. Unsafe disposal also affects our environment. A vast amount of prescription drugs have been found in the drinking water supplies of at least 41 million Americans.
That’s why it’s so important to know about medicine take-back programs. Please contact your city's trash and recycling service to find out if there is a medicine take-back program in your community.
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| Contact Us |
National Fibromyalgia &
Chronic Pain Association
31 Federal Avenue
801.200.3627
contact@fmcpaware.org |
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For advertising and
sponsorship:
Jan Chambers
mailto:info@fmcpaware.org
National Fibromyalgia & Chronic Pain Association
801.200.3627
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NFMCPA Leaders Against Pain™
National Training Event for New & Veteran
Support Group Leaders/Patient Advocates |
Do you know that patient advocates are needed and utilized by Congress, the FDA, leading research institutions and more? Patient advocates play a critical role in bringing attention to diseases, and how diseases are managed and researched. Celebrity advocates include Michael J. Fox for Parkinson’s and Lance Armstrong for Cancer. There are hundreds if not thousands more who are working behind the scenes everyday with physicians and policymakers to create a better way of life for people who share their disease. September is Chronic Pain Awareness Month and theNational Fibromyalgia & Chronic Pain Association (NFMCPA) is seeking applications for the 5th Leader’s Against Pain™ (LAP) training program.
The program is for both veterans and newcomers to patient advocacy. The highly interactive LAP teaches skills for leading an effective support group and advocating on behalf of people with FM and overlapping conditions. Course presenters include NFMCPA officers and longtime health advocate and President and CEO of Healthy Motivation, Amye Leong. Ms Leong received the President’s Service Award, America’s highest honor for community service in 2001 from President G.W. Bush.
Applications are due by October 3, 2012. For full information about the program, please click here click here or go to www.fmcpaware.org. (If it is past the deadline and you are interested, please contact us to check availability due to cancellations.)
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| Sep/Oct Fibromyalgia-Chronic Pain LIFE™ Magazine |
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The Sep/Oct 2012 issue of Fibromyalgia & ChronicPain Life magazine is now available in print and free online. Feature articles include:
- Special Report on Brain Imaging of Chronic Pain
- National Report that is Changing Your Life: IOM Relieving Pain in America
- PainTracking - Knowing What Works for You
- CranioSacral Therapy
- Pet Therapy
Click here for free digital version. Click here to order a print issue.
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| Mark Your Calendar: Allsup True Help Disability Web Expo Sept. 27 |
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Please join the National Fibromyalgia & Chronic Pain Association going virtual during the Allsup True Help® Disability Web Expo on Thursday, Sept. 27, from 9 a.m. to 4 p.m. CST.
This free online event is anticipated to be the largest-ever virtual experience geared to meet the needs and interests of people with disabilities and chronic illness. Caregivers, healthcare providers and the general public also are encouraged attend.
At the Allsup True Help Disability Web Expo, participants will be able to:
Interact with experts through live chats, workshops, Q&A sessions and one-on-one discussions.
Gather information on accessing benefits, community resources and other services from health and financial organizations.
Share thoughts, ideas and concerns via surveys, chats and message boards.
Network with fellow [organization] members.
Register for prizes.
We hope you can join us Thursday, Sept. 27, 2012, from 9 a.m. to 4p.m. (CST) from the comfort of your own computer. Go to WebExpo.Allsup.com or click on the image below to register today. Can't make it? The Expo will be archived until December 26, 2012.
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| Health E U: Six Perspectives of Life |
Self-management is taking center stage in all levels of healthcare including policy making, insurance, and at your physician's office. Self-management in chronic illness (1) empowers patients, and (2) places more responsibility on them. Self-management is the patient’s key to better access to medical care and any pain medications that may be needed.
Health E U focuses on the six areas of life:
- physical
- emotional
- intellectual
- spiritual
- social
- financial
Managing chronic pain illnesses is like being in a row boat. The person with the chronic condition has one oar, and the healthcare provider has the other. If only one oar is used, the row boat goes around in circles. If the distant shore is to be reached, both oars must be used in partnership.
Healthcare providers encourage us to sleep and eat well, exercise, and avoid stress. They are clearly saying that these lifestyle choices are as important as the specialized treatments they also offer. Sometimes patients ignore these words of wisdom and because of the chronic pain want their HCP to "fix this problem right now.” That approach is quickly being replaced by physicians who expect patients to be active participants in managing their chronic illnesses. With the nationwide attention on misuse of prescription drugs, prescribing physicans are less willing to write scripts for pain. A trusting physician-patient relationship and using multi-modal treatments (including self-management) are now frequently required to receive a prescription for pain medications.
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| Health E U Financial Perspective |
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One of six Health E U perspectives, financial self-management includes wise spending and saving. As you know, we work daily to help improve the lives of those struggling with fibromyalgia and chronic pain. From education and support, to advocacy and research, we put our efforts where we believe they will make the biggest difference. This message is an announcement about a new effort to help our members in a way that might surprise you.
We have heard personally from many of you about how the debilitating pain associated with fibromyalgia and chronic pain illness has changed your lives. All too common are stories of physical challenges like working, walking, sleeping and even eating; and emotional challenges like limited independence and frustration caused by physicians who don’t know what to prescribe, how to treat, or what to do. But lately, I’ve been hearing about another significant challenge we all face – financial health.
Many are experiencing the pain and economic discomfort created not only by our individual circumstances but our struggling economy. From prescriptions and physical therapy to doctor visits and medical treatment – we know how difficult it can be for you to get the help you need. Even here at the association, the need for operating funds and all-important research to find a cure has never been greater.
We are proud to announce a new partnership that will be a true win-win for members AND the NFMCPA. We have partnered with WakeUpNow Fundraising who will help you save hundreds of dollars per month - while generously donating 40% of the proceeds to the NFMCPA to help us find cures and promote advocacy for fibromyalgia! As members of WakeUpNow, we’ll all enjoy:
- Big discounts on prescriptions as much as $25 off per prescription on top of any discounts or insurance you may have
- Savings on groceries, travel, shopping
- 14%+ discounts on cell phone bills
- Access to hundreds of dollars a day in free offers and product samples
- Access to personal financial software tools to budget and track your expenses
Find out how much you can save by clicking here. Please forward this to an interested friend.
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| "Triumph over Pain Run, Walk or Roll" |
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US Pain Foundation is proud to host their 2nd annual "Triumph over Pain" Run, Walk or Roll benefiting various organizations on September 29, 2012, in Rockport, Massachusetts. These organizations include NEADS, Reflex Sympathetic Dystrophy Syndrome Association, Susan G. Komen, U.S. Pain Foundation and the Wounded Warrior Project. Click here for more information. Please forward this to an interested friend
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Urgent California Call to Action (CTA) re: Limiting Step Therapy for Pain Medication
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Governor Jerry Brown has 5 more days to act on AB 369. The health plans are working overtime to get the Governor to veto this bill, so your support letters are urgently needed. If you have not sent him a support letter, PLEASE do so now. Please click here to learn how you can help immediately. To learn more about the NFMCPA's position on step therapy, click here.
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DE, MD, WV Call to Action (CTA)
re: Fail First for Pain Medication
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As West Virginia and Maryland state legislators look for ways to trim their state budgets, reducing medication costs is one of the easy targets. Not having a medical background, there is less understanding of the increased suffering and increased created for people chronic pain by developing fail first, step therapy, tiered, or restricted access to FDA approved medications for an illness. Decisions on pain medication therapy belong in the physician-patient relationship rather than in a legislative subcommittee (often called Drug Use Review (DUR) or Pharmacy and Therapeutics (P&T)committees). When legislatorion creates barriers to appropriate pain medications, more human suffering and expense to patients results. If you live in these states, we urge you to write to and personally contact your state legislators with your concerns and personal stories. In Delaware, the state medical association supported successful legislation that banned insurance companies from requiring patients to fail first on any medications before being prescribed the medication their doctor recommended.
For more information explaining fail first, step therapy, and tiered medication requirements, please click here.
For your state legislators' contact information, please click here.
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Survey for NeuroEndocrineImmune Illnesses
Research Interest |
Supporting researchers studying fibromyalgia and overlapping (or co-related) conditions is one of the best ways to contribute to a better quality of life for all of us affected by these illnesses. Our community has been instrumental in helping bench scientists and clinicians discover more about our illnesses and find new treatments. We've come a long way to better understanding since the people with these illnesses have been involved in providing insights. A hospital in the is interested in creating a center of excellence for NeuroEndocrineImmune diseases. If you are interested in participating in this survey, please click here.
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| PainTracking--Knowing What Works for You" |
"Perhaps the greatest challenge of living with chronic pain is the uncertainty. One minute you may feel reasonable well, and the next as though you stepped into a buffalo stampede. When flare-ups are unpredictable, life can feel frightening and making plans becomes virtually impossible.
Nearly twenty years ago, when fibromyalgia struck, I felt betrayed by my body. I read whatever I could get my hands on to try to find answers. I tried exercise. I tried rest. I tried medications. I tried to "look on the bright side." But no matter what I tried, I experienced intense pain peppered with mysterious reprieves." Author Deborah Barrett discusses her new book Pain Tracking in this month's Fibromyalgia & Chronic Pain LIFE magazine, page s 10-11 . Please click here to read more.
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September is Pain Awareness Month!
Does Your Congress Member Know? |
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Please consider contacting your Congress Member today. This is the beginning of a suggested letter. To see a complete letter, please click here.
To: All members, U.S. Senate and U.S. House of Representatives
Re: Pain Awareness Month
Dear Member of Congress:
I am writing to you regarding an issue that affects the lives of millions of Americans every day. From veterans and people living with life-threatening illnesses to the small business owner down the street, chronic pain knows no bounds and leaves no demographic untouched. Yet little is understood about this illness.
Chronic pain is pain that continues a month or more beyond the usual recovery period for an injury or illness or that goes on for months or years due to a chronic condition. According to the Institute of Medicine’s 2011 “Relieving Pain in America” report, an estimated 100 million people in the United States are burdened with chronic pain. Despite this fact, far too little is understood about chronic pain and pain management. As September marks “Pain Awareness Month” I am asking for more research and education of chronic pain at all levels...
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The mission of the National Fibromyalgia & Chronic Pain Association (NFMCPA) is to build a united patient and medical community to create a strong voice and organizational base to educate and execute advocacy programs regarding access to care, scientific research, diagnosis and treatment for people with fibromyalgia and overlapping conditions. On our website you can find: support groups around the world, information about overlapping conditions, research, archived newsletters and press releases, and support.
Please consult with your physician for medical care and treatment. The information in this newsletter is not a substitute for professional medical, legal, or financial advice. The publisher takes great efforts to ensure the accuracy of information herein. |
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