A network of organizations advocating for people with NeuroEndocrineImmune diseases* 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.
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.
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 Diseases (NEIDs): NeuroEndocrineImmune Diseases 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