Dr. Lapp IACFS conference summary http://drlapp.com/news/iacfs-2011-summary/ This is the only mention I've seen anywhere about the Coalition 4 ME/CFS presentation/session from the conference. I have seen NOTHING in any of the Coalition 4 ME/CFS material about moving PVFS or any concern or mention of removing benign from the term benign Myalgic Encephalomyelitis. All I've seen on various message boards is that the Coalition 4 ME/CFS requests have nothing to do with ME and ME was NOT included in their proposal requests because they did NOT ask for any changes. [NCHS topic packet: http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf The Coalition's proposal Option 1 does not mention ME] If this is what they asked for then it should have been listed with request for changes noted as they were very specific in the NCHS write up. [*Coalition 4 ME/CFS also claimed in their material that their proposal was ONLY to classify CFS as neurological but in the NCHS topic packet it it showed that they coded it to ME.] This Coalition 4 ME/CFS has extensive information on a separate website with announcements, press releases, FAQ's etc so hardly seems like it would be error or oversight. And claims that their proposal takes CFS out of the just fatigued category? All this about beating the CFS isn't chronic fatigue drum? That's the best you've got? OK I doubt it and this has not occurred in other countries that have done this exact same thing so I don't think so. Why the discrepancies? Jill McLaughlin ----- http://drlapp.com/news/iacfs-2011-summary/ Coalition 4 ME/CFS Many of you may be aware that over the next two years the manner in which illness is defined will be changing radically. Not only is the World Health Organization revamping its disease codes, but by January 2013 the National Center for Health Statistics will unveil the new International Classification of Diseases (ICD-10 CM). The latter is a totally new system of categorizing illness. How a disease gets categorized makes profound differences with respect to validity and understanding as well as reimbursement amounts and insurance issues. To this end, the Coalition will be sending letters and lobbying all agencies involved in the categorization process. Currently CFS is classified under Symptoms and Signs, Malaise and Fatigue, and the Coalition proposes moving CFS to Diseases of the Nervous System. Post Viral Fatigue Syndrome is currently classified as Other Disorders of the Brain, and the Coalition proposes moving PVFS to Diseases of the Nervous System also. ME is currently referred to as Benign Myalgic Encephalomyelitis and the Coalition proposes to redefine ME as Myalgic Encephalomyelitis (benign). The major point here is that ME is anything but benign to one who suffers with it, but the WHO and the NCHS insist on keeping the word benign because ME does not lead to imminent death. [Ed. note: perhaps non-fatal would be a better descriptor than benign!]. The proposals take CFS and PVFS out of the just fatigued category and separate them from psychological disorders that also cause fatigue; they would bring the USA into alignment with the WHO classifications already in effect in Canada and Germany; and they support the recommendation of our CFS Advisory Committee to the Department of Health and Human Services. If asked to support the Coalition 4 ME/CFS, please give their proposals careful consideration! Posted on October 8, 2011 by Charles W. Lapp, MD (Hunter-Hopkins Center, P.A.) http://drlapp.com/news/iacfs-2011-summary/ .