For Immediate Release
March 15, 2011
The First National Coalition of NeuroEndocrineImmune Diseases Organizations
is established in the U.S.
Coral Gables, FL, 03/08/2011 – The first national coalition of NeuroEndocrineImmune Diseases (NEIDs) organizations is established in the U. S. The Coalition4ME/CFS is an alliance of organizations addressing the plight of the ME/CFS and NEIDs communities. Its mission is to present a unified voice with common goals, objectives, and a dedication to bring quality of life for patients and families. This professional collaboration will strengthen its member organizations and promote resource-sharing, professional and leadership training, and networking among its membership. The Coalition4ME/CFS will advance a comprehensive local and national legislative strategy so ME/CFS patients can lead productive and healthy lives.
The Coalition4ME/CFS will work to engage and mobilize governmental health agencies, the private bio-medical industry, the scientific and medical sectors, as well as the public. Ultimately, the main goal is to bring improved quality of life and find a cure for ME/CFS and related NeuroEndocrineImmune diseases.
We welcome the following organizations as Charter Members: Chronic Fatigue Syndrome/ Fibromyalgia Organization of Georgia, Inc., CFS Solutions of West Michigan, PANDORA, Inc. (Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research & Advocacy, Inc.), Rocky Mountain CFS/ME & FM Association (RMCFA) and Vermont CFIDS Association, Inc.
The Coalition4ME/CFS is inviting other patient advocacy 501(c)(3), non-profit organizations to join. Research organizations and other businesses that support and / or share a similar vision and mission, and or cater to the needs of the NEIDs community, are also invited to join as associate members.
"The time is now for a joint national strategy." said Mike Munoz, executive director with the Rocky Mountain CFS/ME and FM Association. "This is a first big step partnering in the first ME/CFS coalition with a unified mission to change the outcome for ME/CFS patients."
“A strong and unified voice is key and crucial to get a national agenda for ME-CFS and other related NeuroEndocrineImmune Diseases (NEIDs) in place”, said Marly Silverman, Founder of PANDORA. “A growing coalition will address organization’s challenges experienced within our non-profit sector. The need for a stronger, more unified approach to ME/CFS public policy has been missing for a long time in the overall advocacy efforts.”
Recent success from a joint effort when 10 organizations signed a letter to Dr. Elizabeth Unger, who was recently appointed to oversee ME/CFS research at the CDC, yielded great results. The letter and a petition provided Unger with nine action points where change is needed in their ME/CFS program. Subsequent to that letter, an ongoing dialogue has been established between the CDC and the participating organizations.
Additional efforts include coalition members planning grassroots activities for the State of the Knowledge of the Science on ME-CFS (SOK), Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting, and May 12, 2011, International Awareness day for ME/CFS & related NeuroEndocrineImmune diseases.
We are confident that the coalition future efforts will augment the current scientific breakthroughs in the field of NEIDs. The coalition will make sure scientific discoveries translate into a change in public health policy that addresses quality of life, and a better future for patients with NEIDs.
Click here for additional quote statements from current coalition members and visit the Coalition4ME/CFS website.
Coalition4ME/CFS was founded on March 1, 2011, and its current Charter members are Chronic Fatigue Syndrome / Fibromyalgia Organization of Georgia, Inc., CFS Solutions of West Michigan, PANDORA, Inc. (Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research & Advocacy, Inc.), Rocky Mountain CFS / ME & FM Association (RMCFA) and Vermont CFIDS Association, Inc. The mission of the coalition is to strengthen its individual member organizations, mentor and train potential leaders, advance collaborative efforts, promote resource sharing across organizations and as ONE strong team to solve the future for ME/CFS.
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Contact: Tina Tidmore