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- Last Updated: 06 January 2016 06 January 2016
With all the discussion around the Institute of Medicine ME/CFS report, have you thought about the Pathways To Prevention report lately? The final report, to give guidance to the National Institutes of Health on future funding ME/CFS research (including a recommendation for funding Centers of Excellence for ME/CFS) and to review treatment recommendations, has been delayed. Find out why in "Does Advocacy Work, P2P Edition - Good News and Bad News."
UPDATE: The Office of Disease Prevention promises to change the way public comments are handled in the future. "For future P2P workshops, public comments will be posted online as they are submitted to enhance the transparency of this process and to ensure that all comments are received by the panel in a timely manner."
Read our letter to the Office of Disease Prevention (ODP), and ODP's response.
Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.