hands around the world

Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change

by Jody Smith The FDA held the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change on November 15, 2012. An invitation had been issued earlier to Phoenix Rising and anyone interested in attending. There was not much mention of ME/CFS until well into the webinar, which surprised me and left me dismayed at first. Instead, speakers talked about


Ending Neglect at the NIH: The ‘Campaign to End Chronic Pain in Women’ Get’s Its Chance

Posted by Cort Johnson The statistics the Campaign to End Chronic Pain in Women cites are startling…$50 million women in the US suffer from six chronic pain conditions (ME/CFS, FM, Interstitial Cystitus, TMD, Endometriosus, Vulvodynia), one of which is ME/CFS, which cost the US economy 80 billion dollars a year…..yet the NIH devotes only $1.36 per woman a year to


The NIH on ME/CFS in 2012 Pt III: Neglect Imperils ME/CFS Research

Posted by Cort Johnson NIH neglect is on the verge of producing a downturn in ME/CFS research that may take years to recover from. Some background information is necessary. The Effective Grant Program (and the Ineffective One) The NIH produces two types of grants; Program Announcements (PA’s) and Requests for Applications (RFAs). Program Announcements ‘announce’ what kind of research the


The Phoenix Rising Board Letter to CDC CFS Research Chief Dr. Unger

Posted by Cort Johnson As the Pandora/Dr. Unger meeting, which was prompted by a Pandora letter signed by several US organizations, is about to occur and as we move into our big advocacy month the Phoenix Rising Board is releasing its own letter to Dr. Unger (and is explaining why it did not participate in the first letter.) ——————————————————————- The Phoenix