Society Logo
ME/CFS Australia Ltd
Please click here to donate ME/CFS Australia (SA) Inc
 
 
Facebook
 
ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

Office:
Suite 506,
North Terrace House,
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

Disclaimer

ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Become a Member
PDF Application Form (PDF, 242KB)
Why become a member?
 

New Fibromyalgia video

Wednesday 10 June 2009

The National Fibromyalgia Association and Pfizer have produced a video that features the Association's president, Lynne Matallana, and Kim Dupree Jones, PhD, RN, FNP:

The video has an accompanying article:

The Painful Truth About Fibromyalgia

NFA President and Kim Dupree Jones, PhD, FNP Join Together on Fibromyalgia Awareness Day to Raise Awareness of a Common, But Often Overlooked Chronic Pain Condition

ANAHEIM, Calif. (May 12, 2009) - Fibromyalgia is often called an "invisible" illness because the people who have it typically do not look sick. But for them, something as simple as a hug or a handshake can be painful.

In fact, fibromyalgia is one of the most common chronic, widespread pain conditions in the U.S., affecting more than five million Americans, predominantly women (women account for 80 percent to 90 percent of those diagnosed). It can have debilitating effects on a sufferer's life, impacting people's ability to work and engage in everyday activities, as well as their relationships with family, friends and employers.

In recognition of Fibromyalgia Awareness Day, Kim Dupree Jones, PhD, FNP, Oregon Health & Science University, and Lynne Matallana, president and founder of the National Fibromyalgia Association (NFA), have joined forces to raise awareness about fibromyalgia, increase the understanding of the condition, and provide support to the fibromyalgia community.

Despite its prevalence, fibromyalgia is a complex and frequently misunderstood condition that remains largely undertreated. Diagnosis can be a lengthy and elusive process. In fact, many patients suffer for years and see numerous doctors before being diagnosed and treated.

"I was at the height of my career as an advertising executive in the mid-90's when I developed fibromyalgia. The pain and fatigue were so severe that I spent the better part of almost two years completely bedridden," said Ms. Matallana. "It was a difficult journey. I saw 37 doctors before receiving a proper diagnosis. My goal is to educate people about fibromyalgia and give them the support they need to take back their lives."

Fibromyalgia is characterized by chronic widespread muscle pain and is usually accompanied by poor sleep, morning stiffness and fatigue. Although the exact cause of fibromyalgia is not known, it is thought to result from neurological changes that prompt patients to experience a heightened sensitivity to touch or temperature that are not normally painful. Research also shows that fibromyalgia may have a genetic component and can run in families.

"In my practice, I see many women who have denied their chronic pain or associated it with stress or their lifestyle, but fibromyalgia is a treatable medical condition," said Dr. Dupree Jones. "It's important for women to talk to their physicians about their pain, and in turn for healthcare professionals to be partners in helping to manage the condition. The prognosis for people with fibromyalgia has never been better."

In the last few years, three treatments have been approved by the Food & Drug Administration specifically for the management of fibromyalgia. Managing pain is an important step for people to reclaim their lives and take control. Following a diagnosis of fibromyalgia, it's important for patients to work in partnership with their healthcare professionals to manage the condition through individualized therapeutic strategies, which may include lifestyle measures (such as exercise, nutrition and relaxation techniques), behavioral support and medication.

To learn more about fibromyalgia and access free tips and resources for everything from finding a healthcare professional and discussing your pain -- to creating a personalized action plan and connecting with other patients, please visit www.FMaware.org and www.FibroCenter.com.

About The National Fibromyalgia Association:

The NFA is a [501(c) 3] nonprofit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people affected by fibromyalgia. The NFA concentrates on patient support and services, awareness outreach, physician continuing medical education and research. The NFA produces extensive educational materials, hosts an award winning Web site and publishes Fibromyalgia AWARE magazine.

About Lynne Matallana:

Ms. Matallana was diagnosed with fibromyalgia in August 1995. After visiting 37 doctors, Ms. Matallana was finally diagnosed by a Doctor of Osteopathic Medicine at the University of California, Irvine. The intensity of the illness caused her to spend two years in bed, suffering with the pain and fatigue associated with the condition. Her frustration with the lack of available treatments and support for people with fibromyalgia inspired her to create an organization that would focus on building awareness for this misunderstood condition. Ms. Matallana is widely recognized for her commitment to raising awareness of fibromyalgia. She has received many honors, including the OC Metro Magazine's "Pain Relief Pioneer" award, American Academy of Pain Management "Advocacy for People with Pain Award" and the United States Food and Drug Administration (FDA) Commissioner's Special Citation. She also serves as a member of the FDA Patient Representative Advisory Committee.

About Kim Dupree Jones, PhD, FNP:

Dr. Dupree Jones is an associate professor in the Schools of Nursing & Medicine at Oregon Health & Science University. Her undergraduate degree in nursing is from the University of Tennessee; her masters and nurse practitioner degrees are from Emory University in Atlanta and her PhD in exercise physiology is from Oregon Health & Science University, as is her post-doctoral degree in neuroendocrine physiology. She is the director of the Family Nurse Practitioner Program and President of the Fibromyalgia Information Foundation, a non-profit organization whose aim for the past three decades has been to disseminate scientifically sound fibromyalgia data. She is a frequently invited international speaker for patients, clinicians and researchers investigating fibromyalgia. She also maintains a clinical practice at Oregon Health & Science University in which she evaluates and treats people with fibromyalgia.

About Fibrocenter.com:

Fibrocenter.com, which is developed and maintained by Pfizer Inc, is intended to empower fibromyalgia patients through education, support and understanding. The website serves as a resource for patients, providing information on the condition including signs and symptoms, personal stories and tips on how to manage fibromyalgia.

Sponsored by Pfizer Inc

The video and article originally appeared here.

 


 

blog comments powered by Disqus

 


Arrow right

More Fibromyalgia News

 


Arrow right

More Multimedia
Previous Previous Page