Monday, May 3, 2010

Advocacy letter supporting awareness, education, research, & insurance reimbursement

In support of "Awareness Day" for fibromyalgia and chronic fatigue syndrome I have sent the following letter to the people posted at the end of the letter. Please feel free to use any of the information herein to write to your congressman or any of the people in the links provided.

"Though our bodies are weak our determination is unbreakable, standing tall, standing strong, standing united and staying committed to finding a cure."

Dear compassionate gentlemen and gentlewomen,

What would you do if you suddenly became ill with unexplained life altering fatigue, severe body-wide pain, or knotted up pieces of muscle fiber in your muscles, but your doctors don’t know what it is, don’t put their hands on you, or worse yet, don’t know what treatments could help you? This is what the fibromyalgia, chronic fatigue syndrome and chronic myofascial pain patient deals with on a regular basis.

According to the Centers for Disease Control and Prevention, approximately 2 percent of the U.S. population has fibromyalgia, a condition that exists because of dysfunction of the hypothalamus-pituitary-adrenal axis causing central sensitization. Studies show that more than one million Americans have the severe debilitating fatigue, swollen lymph nodes, poor healing and other signs of immunologic and autonomic dysfunction associated with chronic fatigue syndrome. Chronic myofascial pain and dysfunction from untreated myofascial trigger points is frequently ignored, yet myofascial injury and illness is a leading cause of physical dysfunction and missed work. These are serious statistics and the health of our nation has been and continues to be at risk. Lack of awareness in the medical community, the insurance industry and the political arena is a serious issue. When a patient is misdiagnosed or the provider is clueless to the etiology or treatment of these disorders the cost of health care escalates needlessly.

I want to see curriculum changes for those who treat us, improving education and dissemination of information for these illnesses. Those who coordinate the Harvard Nurses’ Health study, one of the largest and longest studies on women’s health, have agreed to consider and discuss this topic for inclusion in further studies. Dr. Donnica Moore, the spokesperson on women’s health issues on Good Morning America is propelling information into the media and she has been a guest speaker on Dr. Oz regarding chronic fatigue syndrome. Though statistics show gender prevalence for FM and CFS, the male community is also affected at an alarming rate. We need more research.

Replicated brain mapping studies supports science regarding a disruption of the HPA axis in fibromyalgia. In addition, a recently identified retrovirus called XMRV was linked to the debilitating neuroimmune disease, chronic fatigue syndrome also known as Myalgic Encephalomyelitis. This groundbreaking research by the Whittemore Peterson Institute (WPI), in collaboration with the National Cancer Institute and the Cleveland Clinic, was published in the journal, Science, one of the world’s leading journals of original scientific research, global news and commentary. And last but not least, we know scientifically that myofascial trigger points occur as a result of excessive release of the neurotransmitter acetylcholine where nerve meets muscle and when it becomes a chronic myofascial pain problem, it is the result of its co-existence with a centrally mediated disorder such as fibromyalgia, migraine headaches and others, causing a wind-up phenomenon which interferes with messages to the peripheral muscle compounding pain and dysfunction. Ask yourself, did I, my insurance company, or country know any of this?

We need your support for insurance provisions moving alternative therapies into the mainstream. Therapies that have been scenically and clinically proven, such as, myofascial trigger point treatment, massage, acupuncture and other methods can improve muscle function and provide feedback to the brain that will promote wellness.

I am counting on you to be part of the movement for change. I look forward to hearing your strategies for becoming involved and making the necessary changes regarding the health of so many Americans.

Celeste Cooper, author of
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-authored with Jeff Miller, PhD)

You may contact me at ….
For more information visit,

In some instances, the letter was sent to the only contact information I could find, or had to be altered to meet the specifications of the site. This letter was sent to:

American Osteopathic Association,,, and the mentoring program

Missouri Senators, Kit Bond and Claire McCaskill
Find your Senator,

American Academy of Family Physicians

American Academy of Pain Management

American College of Rheumatology,, and the ACR directly from their website.

Patient action Network

American Medical Association inquiries.shtml

The World Health Organization,
American Neurology Association,

The American Association of Clinical Endocrinologist,

National Association of Insurance commissioners,
Local yours by state,

The Whitehouse, President Obama and Vice-Pres. Biden

Represenative, Sam Graves
Find yours at Contact information

State Governor of MO, Jay Nixon
Finding your governor,

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