Thanks for posting. This is the only mention I've seen about the coalition's presentation from the conference.
So are they misrepresenting to others? That coalition website is extensive. There are proposals, announcements,
power points, FAQ's.
I have seen NOTHING in their material about moving PVFS or any concern or mention of removing benign from the term
benign myalgic encephalomyelitis.
They 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 CFS.
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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!
IACFS International Conference Summary
Posted on October 8, 2011 by Charles W. Lapp, MD (Hunter-Hopkins Center, P.A.)
http://drlapp.com/news/iacfs-2011-summary/