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 letter sent to potential sponsor of NC's Awarenss Day bill 
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Post letter sent to potential sponsor of NC's Awarenss Day bill
I tried to call my state representative today to discuss sponsoring either an Awareness Day resolution or bill (sample in sep post). She was unavailable, so I left a phone message and then followed up with this letter. I hope to speak with her soon, and I will keep you posted.

Ms. Kristine Lanning
4413 City of Oaks Wynd
Raleigh, NC 27612
919-571-1605

February 20, 2007

The Honorable Jennifer Weiss
NC General Assembly


Dear Representative Weiss,

I am writing on behalf of the Triangle Fibromyalgia Positive Energy Group to request that you sponsor either a resolution or bill to declare May 12 as North Carolina Fibromyalgia Awareness Day. I am a constituent who has been suffering from fibromyalgia (FM) and chronic fatigue syndrome (CFS), a debilitating condition for two and a half years.

An Awareness Day would educate patients, their families, employers, even physicians, and all other citizens about FM. Like most people, prior to my diagnosis I was completely unaware of how insidious FM can be. I would like to briefly share my experiences of failing to get a diagnosis at the best health care facilities in the Triangle over a nine month period, transforming from an active, vivacious woman with a wonderful career to an invalid, and finally getting treatment and finding support through fellow FM patients.

The Triangle Fibromyalgia Positive Energy Group has created both a draft resolution and draft bill based on facts regarding FM. May 12th is officially and unofficially designated as FM Awareness Day around the world. We are not seeking funding or any form of mandate. I would like to meet with you at your convenience to discuss our request.

Sincerely,
Kristine

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Tue Feb 20, 2007 10:11 pm
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Post Comment please: NC DRAFT FM Awareness Day resolution
The alphabetical identification on the "whereas" paragraphs are here to facilitate discussion and comments. They will be removed for introduction to the legislature. PLEASE give me your comments. Ajaya helped me draft this. I have an extremely hard time proofing documents - my eyes and mind play tricks on me. Also I want feedback if I left out any important aspects of FM. Thanks! Kristine

GENERAL ASSEMBLY OF NORTH CAROLINA
HOUSE JOINT RESOLUTION

Declaration of May 12 as
North Carolina Fibromyalgia Awareness Day

A JOINT RESOLUTION to recognize May 12 as North Carolina Fibromyalgia (FM) Awareness Day with the purpose to encourage FM patients across the state to form support organizations and to educate employers, physicians and citizens of North Carolina of the facts regarding FM.

A) Whereas, some 130,000 North Carolinians and 6 million Americans suffer from FM; although a higher percentage of women of all ages and races are affected, it does strike men and children.

B) Whereas, the debilitating nature of FM has a serious impact on patients, their families, friends, and employers, as well as society at large.

C) Whereas, FM is a chronic pain syndrome characterized by widespread musculoskeletal aches, pain, and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances.
Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient.

D) Whereas, fatigue is also a significant symptom of FM; the fatigue is unique in that there is exhaustion without exertion which pervades the body and mind and considerably diminishes physical and mental capacity that interferes with even the simplest daily activities and leaves the patient with a limited ability to function.

E) Whereas, FM patients have an associated sleep disorder that prevents them from getting adequate deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in stage 4 deep sleep of FM patients.

F) Whereas, additional FM symptoms may include irritable bowel and bladder sometimes with incontinence, headaches and migraines, restless legs syndrome, impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and impaired coordination.

G) Whereas, FM is an invisible ailment, the normal physical appearance makes many patients’ family, friends, employers, and even some uninformed physicians regard them as malingers. FM patients not only fail to obtain treatment, but often either implicitly or explicitly get the message that FM “is all in their head” which may increase their depression and misery.

H) Whereas, in 1990, the American College of Rheumatology (ACR) legitimized FM as a medical syndrome and established a widely accepted protocol for diagnosing FM. ACR’s clinical criteria require that a patient have widespread pain and at least 11 of 18 specific tender point sites in all four quadrants of the body lasting at least three months in duration. Since there currently is no blood or imaging test for diagnosing FM, the protocol requires elimination of all other conditions that present similar symptoms entailing numerous complex tests which take months, are painful, and may exacerbate FM.

I) Whereas, the Social Security Administration issued a ruling in 1999 (SSR-99-2p) that FM is a medically determinable impairment in the context of its disability insurance program.

J) Whereas, there is no cure for FM at this time, patients are prescribed a wide array of medications, many off-label, to treat symptoms, including anti-seizure drugs, narcotics, steroids, sleep aids, anti-depressants, anti-anxiety medications, and dietary supplements.

K) Whereas, some unscrupulous practitioners, from promoters of dietary supplements to licensed physicians, have preyed on FM patients and their families by selling them unproven, worthless and even dangerous treatments often at exorbitant costs.

Be it resolved by the House of Representatives, the Senate concurring:

SECTION 1. The General Assembly shall recognize May 12 in perpetuity as North Carolina Fibromyalgia Awareness Day.

SECTION 2. The General Assembly shall request that The North Carolina Medical Licensing Board encourage all North Carolina primary physicians and those who practice in specialties that relate to the treatment of FM, such as rheumatology, neurology, autoimmune disorders, and endocrinology, to become knowledgeable in the symptoms and treatments of FM.

SECTION 3. The General Assembly shall encourage media outlets to observe North Carolina Fibromyalgia Awareness Day by educating the public on the facts of FM and publishing patient stories.

SECTION 4. The Secretary of State shall transmit a copy of this resolution to The North Carolina Medical Licensing Board and to all North Carolina medical schools.

SECTION 5. This resolution is effective upon ratification.

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Tue Feb 20, 2007 10:18 pm
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Wonderful!! Wish I had a group here to sponsor something similar in Oregon.

Would you mind if I pirated some (most) of this and at least got my town to adopt a resolution?

Kendall


Tue Feb 20, 2007 11:34 pm
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That sounds very good!!!! The only thing I found, which is probably debatable, is in the title for the calling of the resolution by the house and senate.....I would add after the comma, "and by" the Senate. Instead of the house, senate.

Did that make any sense?

Really good and thorough!

Mary


Wed Feb 21, 2007 7:03 am
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Kristine, You did a fantastic job. Thank you.

Please extend my thanks to Ajaya too for helping you with this.

Image

:hug2 Kathy

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Wed Feb 21, 2007 1:59 pm
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Post Update, Borrow and Come!!!
Today I spoke with my state representative. She has not yet agreed to do anything, I just set up an apt next week - I don't think she'll be able to resist me in person : )

Also, please anyone who wants to borrow any of my ideas, DO IT!!! That's why I am posting here.

AND - I want all NC fibromites to join us in our media event when this comes to pass. The first 4 to sign up get rooms at my B&B in beautiful downtown Raleigh. BonnieS is already registered. Others are also invited if you can make it.

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"Imagination is more important than knowledge. Knowledge is limited. Imagination encircles the world" - Albert Einstein


Wed Feb 21, 2007 3:25 pm
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