Related Links & Advocacy Alert on behalf of other organizations

October 6, 2006

Advocacy Rounds

by Marly Silverman

You have to check the web site of the National Alliance for Myalgic Encephalomyelitis!  The web site has awesome and cool graphics to highlight their goals and objectives. Check their ongoing advocacy letter campaign which is similar to P.A.N.D.O.R.A.  The organization was founded by Steven Du Pre and Lois Ventura. " It was established to address the issues of recognition and definition, and to raise awareness of this devastating neuroimmune disease that has afflicted nearly a million people in the U.S. and millions worldwide."  I am always amazed by the tenacity and by the creativity that surrounds neuroendocrineimmune disorder patients when they engage in advocacy efforts.

Rich Carson, a remarkable business executive who was diagnosed with CFS in 1981 at the young age of 23, is the founder of Pro-Health, Inc., a leading e-commerce business selling supplements, vitamins and other items to CFS, FM and chronic ill individuals.  Rich's picture is one of the exhibit pictures - "Faces of CFS", included in the CDC-"SPARK" educational campaign headed by the CFIDS Association. The exibit is touring in the United States. Their latest stop I heard, was in Salt Lake City, Utah.

Rich is now spearheading a campaign titled " The Fair Name Campaign". His approach is that the name-chronic fatigue syndrome-needs to be discarded. And who can find a problem with this approach? This campaign has been publicized through Pro-Health CFS and FM newsletters and his approach is logical, detailed, business minded and is directly linked to the soul of our neuroendocriniemmune community of suffering. The response to his campaign has been positive, civic minded and through client/patient input, he has shared some insightful responses from our community. This is a healthy, welcomed dialogue that needs to be faced by the scientific community at large.

As I continue to participate in many scientific and advocacy events, and in many govermental meetings, patient's lobbying efforts and letter campaigns, I think that this issue requires continuing extensive dialogue in all fronts.

Pro-Health has detailed articles on CFS, FM and other related illnesses in their library. Over the years P.A.N.D.O.R.A. members have relied on the information they provide to our neuroendocrineimmune community. Just about every empowerment group meeting in Florida that P.A.N.D.O.R.A. supports, one or two members will bring a copy of an article published on their web site.

There has been so many exciting conferences, seminars and other advocacy related events in our national and international community, that I can't keep up with every event or important announcement. But I am not complaining at all! I believe it reflects favorably in our community, as we, as patient advocates are assuming healthy leadership roles in all corners of the world by working on quality of life issues, scientific research and viable treatments for neuroendocrineimmune disorders.

And that aint' bad all! Life is good!

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June 28, 2006

OUR ASK

by Marly Silverman

For the past year and half, when we visit our congressional representatives and senators on Capitol Hill we have included the following legislative issues listed below as part of our "ask".  Without these efforts in place, many people in our community of suffering will continue to suffer and will endure additional and, many times irreversible physical, mental, emotional and financial adversities simply because they have no where to go for medical care. As it is often said in a myriad of situations, "It ought to be a law!"

We realize that without these safe support systems in place, individuals and families who are dealing with neuroendocrineimmune disorders will not even have the capability to survive, much less the opportunity to lead productive lives.  These two issues speak directly to many in our community, and they are issues that considerably affect the overall quality of life for too many individuals and far too long.

Consequently, we are strongly supporting, advocating, and providing legislative lobbying assistance to the efforts of the America Pain Foundation.  Please to go our Advocacy Page to read more about these important efforts.

We are also supporting the legislative efforts of the Medicare Rights Center to end the 24-month waiting period for persons who due to poor health qualify to receive disability benefits under Social Security. Click here for the most recent press release concerning these issues.  Individuals who are suffering with CFS, FM and other potentially disabling neuroendocrineimmune disorders endure serious financial and physical consequences because they lack access to medical care during the 24 months that they have to wait until Medicare coverage begins.

We ask you that you visit the web sites of these two organizations and lend your support to their cause which is also OURS!.  Mention to their organizers that P.A.N.D.O.R.A. sent you!

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CFS Public Awareness Campaign!

Chronic fatigue syndrome, or CFS, is a complex chronic illness that results in profound fatigue and a number of other debilitating symptoms. The CFS public awareness campaign provides current information about the illness for patients and individuals experiencing symptoms of the illness, caregivers and family members, and health care professionals.

Information is provided here on symptoms, diagnosis and treatment options for CFS. You're not alone. There is help available.                        

            Get informed. Get diagnosed. Get help.

This campaign micro site is part of the CFIDS Association of America’s main web site. To visit the main site, click here.

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LINKS

National Alliance for Myalgic Encephalomyelitis - California, U.S - The organizations was established to address the issues of recognition and definition, and to raise awareness of this devastating neuroimmune disease that has afflicted nearly a million people in the U.S. and millions worldwide.  They have a web site with amazing graphics.

National Fibromyalgia Association, California, US - Previously known as the National Fibromyalgia Awareness Campaign) is a 501 c 3, non profit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with Fibromyalgia by increasing the awareness of the public, media government and medical communities.

Click here for information on the Fibromyalgia Support Group on Ottawa, Canada -

The Oregon Fibromyalgia Foundation- The Oregon Fibromyalgia Foundation, a non profit organization, (OFF) was started in 1995 by Prof. Robert Bennett and Dr. Sharon Clark and their colleagues from Oregon Health & Science University ( OHSU ) in Portland, Oregon. Dr. Robert Bennett was our key note speaker for Fibromyalgia at our 2004 Annual Neuroendocrineimmune Disorders Inspiring Hope Through Awareness™ and so was Dr. Sharon Clark who presented on the benefits of Exercise for FM patients.

www.cfids.org - The CFIDS Association of America is the largest and most active 501(c)(3) charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome (CFIDS, also widely known as chronic fatigue syndrome or CFS). Since its founding in 1987, the Association has invested over $16.4 million in support efforts to bring an end to the pain, disability and suffering caused by CFIDS.

The CFIDS Association is currently is promoting the national education campaign called Spark - "The first national public awareness campaign on chronic fatigue syndrome was launched June 7, 2006. This multifaceted $4 million campaign is designed to educate both the general public and health care professionals about CFS. The campaign will extend through 2007.

Primary funding for the campaign has been provided by the Centers for Disease Control and Prevention (CDC). The funding came from the health marketing arm of the CDC, leaving their CFS research budget intact. The CFIDS Association of America was selected as the contractor to implement the campaign.

The campaign delivers vital information about who is at risk for CFS, the symptoms of the illness, treatment and management options, the importance of seeking diagnosis and treatment, and the impact of CFS illness on both patients and family members.

This campaign will ignite interest in CFS and spark increased understanding about the illness among the general public, health care professionals, legislators and the media. The campaign also has the potential to increase research funding for CFS from federal, biotech and pharmaceutical sources over the next decade. To go to the CDC’s CFS and campaign web site, click here

www.cdc.gov - The Centers for Disease Control and Prevention

To go to the CDC’s CFS SPARK campaign web site, click here

www.ncf-net.org - The National CFIDS Foundation - Founded in 1997 by two individuals who have advocated for over 14 years on behalf of person with CFIDS (Chronic Fatigue Immune Dysfunction Syndrome). The goals of the Foundation are to help fund medical research to find a cause, expedite treatments and eventually a cure for this devastating disease.  The NCF also strives to provide information, education, and support to those people who have CFIDS (also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and many other names)-- as well as related illnesses such as gulf war syndrome, (GWI) and multiple chemical sensitivities (MCS).

Body Mind Connection - Holistic and natural healthcare for people of all ages. Acupuncture and Bio-Energetic Medicine.

Body Kinetics of Florida, Inc. - Body Kinetics of Florida is a fully equipped Pilates Studio that specializes in delivering one-on-one Pilates - evolved fitness and rehabilitation.

CFIDS Report - News and Commentary for the CFS community- Craig Maupin is the editor of a very informative web site. His four part series depicting the inner works of the DHHS, CDC, NIH and their relationship to CFS is excellent. His latest interview was with Dr. Vivian Pinn, head of the Office of Research on Women's Health (ORWH) at the National Institutes of Health (NIH). The last article on this series is The NIH and CFS - Advocate's Concerns - Advocate's Concerns about the response to CFS have varied from low funding to alleged bias. Part 4 of the series looks at some of the history behind the concerns of the CFS community. This is required reading if you are CFS patient advocate.

Dr. David S. Bell - Well known CFS physician, former Chairman of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).

International Association for Chronic Fatigue Syndrome - Medical professional association dedicated to foster research and treatments for chronic fatigue syndrome, fibromyalgia, gulf war syndrome and related illnesses. Current President is Dr. Nancy Klimas. P.A.N.D.O.R.A. is the host organization for their upcoming 2007 International Conference from January 10-14, 2007 at the Bahia Mar in Ft. Lauderdale, Florida. Make sure you attend what it promises to be a great gathering of researchers, advocates and physicians from all corners of the world.

Social Security Disability Coalition - Web site outlining Social Security much needed reform. A good source of information if you are seeking disability benefits under Social Security.

Wisconsin CFS Association - Madison, Wisconsin, U.S. - Strong state organization, whose purpose is to act as a clearinghouse for CFS information within the state of Wisconsin; to assist patients and their families; to encourage communication among agencies, institutions and concerned individuals; and to promote research on the cause, cure, and ultimate prevention of chronic fatigue syndrome.

CFCCC - Chicago, Illinois, U.S. - Chronic Fatigue Syndrome, Fibromyalgia, Chemical Sensitivity Chicago Coalition, Inc. is organized for the purposes of support, education, and advocacy for persons with chronic fatigue syndrome, fibromyalgia, and chemical sensitivity.

The Vermont CFIDS Association, Inc- Vermont, U.S. - This strong state organization newest project, which they recently succeeded, is to push for a bill to create in the state legislature a Physician/Patient Manual for CFS and related illnesses, similar to the New Jersey CFS Association bill.

Fibromyalgia Support Group for Surrey and Sussex - England - Web site of the Fibromyalgia Support Group for Surrey and Sussex in England. Joe Fischer is the founder and coordinator of a 300 (and growing) group membership. Yvette Taylor's, our editor, had her hilarious article Living with Fibro and trying to Laughpublished on their web site too. Joe has also received in 2006 teh L eader Against Pain award recipient from the National Fibromyalgia Association.

OFFER - Utah, U.S.- Organization for Fatigue & Fibromyalgia Education and Research. Their mission is: Network and improve community resources for patients with chronic fatigue syndrome (CFS) and fibromyalgia (FMS);Educate medical providers, patients, and the general public; Advocate on behalf of patients and Research into the cause, diagnosis and treatment of CFS and FM. (I like that the first letter of each item in their missions spells NEAR. They have much to OFFER and a solution is NEAR.)

Axford's Abode - In-depth issues and Information on ME/CFS in England.

NAME - The National Alliance for Myalgic Encephalomyelitis was established to address the issues of recognition and definition, and to raise awareness of this devastating neuroimmune disease that has afflicted nearly a million people in the U.S. and millions worldwide.

AFFTER -   Advocates for Fibromyalgia Funding, Treatment, Education and Research) is a not for profit organization run by volunteers, most of who have fibromyalgia (FMS).  They have a solid organization in place with a professional Board of Directors and a strong Medical Advisory Committee, including nationally and internationally known researchers.

Total Newsletter - Knoxville, Tennessee - This newsletter and the web site is through the suport of Patricia Goleach, owner of the Total Rehab Physical Therapy. She supports local support group meeting for individuals with CFS, FM, MPS, chronic pain and other related illnesses.

The New Jersey CFS Association - New Jersey, U.S. - Strong state association that has a strong advocacy model on CFS pediatrics issues. They are among the few organizations that provide financial educational scholarships to young people diagnosed with CFS and to medical students who have demonstrated the interest to specialize and or learn about CFS in their medical curriculum.

Our CFS/FM World, Inc. -Chino Valley, Arizona, U.S. - They are a nonprofit organization maintained by sufferers of Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome. Our Mission is to improve the quality of life for fellow sufferers, while increasing public, governmental and medical awareness of these diseases. We are grateful to them for supporting our advocacy efforts in Florida and nationwide.