National ME/FM Action Network

The National ME/FM Action Network is a Canadian, registered charitable organization of volunteers reaching out internationally and dedicated to helping the medical, legal and general public in spreading awareness for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/CFS and FMS) through support, advocacy, education, and research and the publishing of a quarterly newsletter "QUEST" which is included with  an annual membership fee. "Unheard Voices".....read more about this new project, we want to hear from you!     Lydia E. Neilson, M.S.M., Founder & CEO Read "Silent Screams" by Lydia Neilson, our first published online story for the "Unheard Voices" Project      View the History & Achievements of the National ME/FM Action Network IMPORTANT NOTE: Throughout this site, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are used interchangeably and this illness is referred to as ME/CFS based on the Consensus Document: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols published in 2003  which has become known world-wide as The Canadian Definition. BECOME A MEMBER AND JOIN THE ACTION!!! MEMBERSHIP APPLICATION Please Donate Now Help Us So We Can Help You Download Complimentary Copies of "Quest" Newsletter PLANS UNDERWAY FOR UPCOMING CONFERENCE!!! - READ MORE The National ME/FM Action Network will host the 10th IACFSME International Research & Clinical Conference Translating Evidence into Practice: Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses Ottawa, Canada - Sept. 22 - 25, 2011 Please Donate to the IACFSME Conference WE NEED YOUR HELP WITH FUNDRAISING Presenter's Guide -> click here for more details IACFS/ME CALL FOR PAPERS FOR UPCOMING FALL ISSUE   PRIORITY FEATURES & LINKS: ME/CFS CONSENSUS DOCUMENTS                                FMS CONSENSUS DOCUMENTS HISTORY & ESTABLISHMENT OF THE CONSENSUS DOCUMENTS ME/CFS/FM OVERVIEWS   ENERGY INDEX POINT SCORE CHART (EIPS)     Description: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome:  Clinical Working Case Definition.  Diagnostic and Treatment Protocols - A Consensus Document Fibromyalgia Syndrome: Canadian Clinical Working Case Definition.  Diagnostic and Treatment Protocols - A Consensus Document History of the development and establishment of the Concensus Documents Overviews (Summaries) of the Canadian Consensus Documents *** French FM Overview (Syndrome de fibromyalgie: Définition clinique et lignes directrice à l'intention des médecins   A Functional Capacity Measurement Tool for Chronic Fatigue Syndrome (CFS) Patients RESEARCH STUDY, VOLUNTEERS NEEDED - INCLUDING THE SEVERELY ILL                                                                     News  Spotlight - September 4, 2010 ME/CFS XMRV DEMONSTRATION: Rivka, a courageous 20 year old women held a mini-protest outside of the American Red Cross National Headquarters in Washington, D.C. (see YouTube Video)    LATEST NEWS ON XMRV AND THE POSITION OF THE NATIONAL ME/FM ACTION NETWORK   8/24/2010 DETECTION OF MLV-RELATED VIRUS GENE SEQUENCES IN BLOOD OF PATIENTS WITH CHRONIC FATIGUE SYNDROME AND HEALTHY BLOOD DONORS 8/23/2010  FINDINGS ON XMRV BY RENO SCIENTISTS CONFIRMED BY U.S. GOVERNMENT  8/16/2010  RESTING BRAIN ACTIVITY ASSOCIATED WITH SPONTANEOUS FIBROMYALGIA PAIN Published Thursday, July 29, 2010 in Psychology & Sociology   Read more....    FRED FRIEDBERG, PHD., PRESIDENT OF THE IACFS/ME SPEAKS OUT ON XMRV STUDIES 07/30/2010  DELAY IN RELEASE OF STUDY ON CFS PROMPTS OUTCRY  07/14/2010  Can detection of xenotropic murine leukemia virus-related virus be linked to chronic fatigue syndrome?  07/16/2010 Expert Ref. Mol. Diagn. 10 (5), 537539 (2010 http://www.expert-reviews.com/doi/pdf/10.1586/erm.10.54 STATEMENT BY WHITTEMORE PETERSON INSTITUTE ON CDC XMRV STUDY  EXTRA, EXTRA! CDC’s Negative XMRV Paper Published July 1; Positive NIH-FDA Paper Sidelined    CDC REPORTS NEGATIVE XMRV RESULTS IN CFS & HEALTHY POPULATION IN THE U.S.:  Summary http://www.retrovirology.com/content/7/1/57   Full article on Provisional at http://www.retrovirology.com/content/pdf/1742-4690-7-57.pdf THE XMRV QUESTION - BLOOD TESTING? 7/1/2010 NIH & FDA CONFIRM XMRV STUDY 08/22/2010 Whittemore Peterson Institute throwing down the gauntlet 04/13/2010 Patient Questionnaire - Whittemore Peterson Institute 11/2009 Retrovirus XMRV - read the latest news!   XMRV - novel serologic assay 04/09/2010 XMRV - Quick Facts 2010 Retrovirus found in 95% of ME/CFS patients 10/2009 Secret Weapon of Retrovirus - 02/21/2010 Webcasts, podcasts, transcripts, slides, conferences, etc. XMRV & more

Website last updated September 5, 2010