For Immediate Release
Organizations Announce Coalition 4 ME/CFS, the First US Coalition to Promote a National ME/CFS Agenda
Coral Gables, FL, March 14, 2011 NeuroEndocrineImmune Disease (NEIDs) organizations have formed the first US coalition to serve their patient community and change public policy. The Coalition 4 ME/CFS mission is to present a unified voice with common goals and objectives that will improve the quality of life for chronic fatigue syndrome and myalgic encephelomyelitis (ME/CFS) patients and their families. This professional collaboration will strengthen its member organizations, promote resource-sharing, encourage networking and provide leadership training.
The Coalition 4 ME/CFS will 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. A multi-organization national strategy will change current practices and bring solutions so that ME/CFS patients can lead productive and healthy lives.
“The time is now for a joint national strategy,” said Mike Munoz, executive director with the Rocky Mountain CFS/ME and FM Association. “We believe partnering together as part of a national ME/CFS coalition with a unified vision, mission and message is a first big step to changing the outcome for ME/CFS patients.”
The Coalition 4 ME/CFS is extending an open invitation to other NEIDs patient advocacy 501(c)(3) organizations to join. Research organizations and other businesses that support and/or share a similar vision and mission, or otherwise cater to the needs of ME/CFS and other NEIDs communities, are invited to become associate members.
“A strong and unified voice is crucial to getting a national agenda for ME/CFS and other related NeuroEndocrineImmune Diseases (NEIDs) in place,” said Marly Silverman, PANDORA’s founder. “We have always looked for opportunities to collaborate with other organizations. This coalition will provide the means for strengthening these efforts and serving individuals with NEIDS in a more efficient approach.”
“Sharing information, resources, fresh ideas, inventive solutions and especially our passion to solve ME/CFS will significantly strengthen both the national voice of ME/CFS sufferers and our advocacy efforts at the local level,” said Lori Chapo Kroger, president of CFS Solutions of West Michigan.
The following organizations are charter members: 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), Vermont CFIDS Association, Inc. and Wisconsin ME/CFS Association, Inc.
Recently, ten organizations signed a joint letter inviting the CDC to an open dialogue 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 a meeting with these patient organization representatives.This shows the success that comes when organizations work together toward common goals.
Coalition members are planning grassroots activities for Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting in May and the ME/CFS & FM International Awareness Day. The coalition’s future efforts will augment the current scientific breakthroughs in the field of NEIDs. The coalition will make sure scientific discoveries translate into changes in public health policy that will improve the quality of life for patients with ME/CFS and other NEIDs.
Please visit the coalition website at Coalition4ME/CFS.org or go to the Facebook page.
About NeuroEndocrineImmune Diseases (NEIDs)
NeuroEndocrineImmune Disease includes myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), fibromyalgia (FM), chronic Lyme disease (CLD), multiple chemical sensitivities (MCS) and Gulf War illnesses (GWI)
About Coalition 4 ME/CFS
Coalition 4 ME/CFS was founded on March 1, 2011. The coalition mission is 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. Our current charter members are 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), Vermont CFIDS Association, Inc. and Wisconsin ME/CFS Association, Inc.
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Contact: Michelle Lonchar at 410-353-8313 or e-mail at mlonchar@pandoranet.info
Thanks, Sandy, for the mention. This is a big deal. We haven’t had a “coalition” like this that I can remember. I hope other .orgs will also join and make our presence even larger during the May CFSAC and Lobby Day initiatives…not to mention their possible involvement in meeting with Unger at the CDC.
You know, there are detractors on all efforts lately, as if there is competition or something. This only hurts everyone’s projects that could raise the international level of awareness considerably.
Thank you for always being here for the patients; they are the only important ones in all these efforts.