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US Coalition to Change ME/CFS Public Policy Launched

  [ 16 votes ]   [ 1 Comment ]
www.ProHealth.com • March 14, 2011

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A network of organizations advocating for people with NeuroEndocrineImmune disorders* has launched its first national project - the “Coalition 4 ME/CFS” (www.coalition4mecfs.org).

The project’s mission is to influence public policy regarding ME/CFS (chronic fatigue syndrome), by mounting a national strategy that “presents a unified voice, with common goals and objectives…. to improve the quality of life for ME/CFS patients and their families.”

Specifically, the national Coalition 4 ME/CFS intends to “engage and mobilize governmental health agencies, the private bio-medical industry, researchers, health care providers and the public toward finding a cure for ME/CFS and related NeuroEndocrineImmune diseases.” And, by working together in this professional collaboration of like-minded organizations, they hope to strengthen their member organizations, promote resource-sharing, encourage networking and provide leadership training.

"The time is now for a joint national strategy" and this project "is a first big step to changing the outcome for ME/CFS patients," says Mike Munoz, executive director of the Rocky Mountain CFS/ME & FM Association, a coalition member.

Charter Members
The Coalition 4 ME/CFS includes the following charter members, though other like-minded 501(c)(3) organizations are  encouraged to join:
• Chronic Fatigue Syndrome/ Fibromyalgia Organization of Georgia, Inc.,
• CFS Knowledge Center,
• CFS Solutions of West Michigan,
• PANDORA, Inc. (Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research & Advocacy, Inc.),
• Phoenix Rising,
• Rocky Mountain CFS/ME & FM Association (RMCFA)
• Wisconsin ME/CFS Association, Inc,.
• Vermont CFIDS Association, Inc.
 
Background
Recently, ten organizations signed a joint letter inviting the CDC to an open dialogue on ME/CFS through regular meetings. The letter and a petition contained nine action points calling for change in the CDC's research into ME/CFS. Subsequent to that letter, CDC officials agreed to schedule a meeting with these patient organization representatives. This shows the success that results when organizations work together on common goals.

Coalition 4 ME/CFS Plans
The Coalition 4 ME/CFS is planning grassroots activities for the Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting in May and the ME/CFS & FM International Awareness Day. These activities will focus on ensuring that scientific discoveries translate into a change in public health policy that will improve quality of life and create a better future for patients with ME/CFS and other NEIDs.
___

* About NeuroEndocrineImmune Disorders (NEIDs): NeuroEndocrineImmune Disorders include myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), fibromyalgia (FM), chronic Lyme disease (CLD), multiple chemical sensitivities (MCS), and Gulf War illnesses (GWI).

Sources: Coalition 4 ME/CFS and RMCFS news releases, Mar 14, 2011


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Recognition for ME/CFS victims
Posted by: monica4
Mar 15, 2011
What an encouragement! It is reassuring to witness the development of an organization like this. Up till now, there was no strong support for myself and others like me. ME/CFS victims were forced to suffer with a disease void of medical, societal or legal acknowledgement. No one believed us. The attention that comes from this coalition as it gains momentum provides a light at the end of the tunnel. I spent 12 years seeking medical treatment for my condition only to be told it was all in my head. I filed a disability claim because I am unable to work and was told by the administrative judge that he did not believe there is such a thing as CFS. I filed an appeal. The attorneys in 22 law offices refused my case stating CFS was difficult to prove and would not represent me. I need help and am not alone in my quest. This coalition offers hope to all CFS sufferers subjected to similar opposition. Finally, someone is taking action. Monica Welsh
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