The grassroots ME/CFS Worldwide Patient Alliance formed in August 2010 in response to a community-wide call for greater patient empowerment and influence. For too long, the public and patients have been left out of the discussion and denied a voice, yet they are the main ones impacted. One of the primary aims of the MCWPA is to enable sufferers of myalgic encephalomyelitis/chronic fatigue syndrome to make public statements concerning inadequacies in government agencies, lack of research cooperation and ignorance of their illness.
By using print and video advertisements, we hope to shift the discussion to improving conditions for patients. Through the support of P.A.N.D.O.R.A., Inc., a 501c3 non-profit organization, a Facebook Cause page was set up to announce the effort and start fundraising. This campaign is patient-driven, with a group of advisers with expertise filtering through ideas then presenting top selections for a patient vote.
Tina Tidmore: Media Relations and Facilitator
Andrea Pring: Website Administrator & International Relations
Marly Silverman: Patient Organization Relations
Karen Ravitz: Fundraising and Patient Publicity
Gabi Jacobs: International Relations
ME/CFS Worldwide Patient Alliance invites patient organizations to do their own fundraising for the campaign and add their signature to the advertisements.
Thus far, the following organizations have shown their support by contributing to costs of professional fees:
The following organizations have contributed with labor.
“I am proud to be part of this movement. A huge thanks to the MCWPA team and to the PANDORA team who in collaboration with hundreds of other patient advocates worldwide have raised the bar in advocacy strategy and commitment.” Marly Silverman