Primer

There is no good source of up-to-date accurate information on the diagnosis and treatment of ME/CFS. The IACFS has stepped in to resolve this problem. A committee of 11 members has developed a brief (less than 30 pages) Primer of ME/CFS. The booklet is currently in its final draft stages and will be made available in the near future. Members of the Primer committee include Ken Friedman, Alison Bested, Ros Vallings, Fred Friedberg, Rosemary Underhill, Alan Gurwitt, Lenny Jason, Staci Stevens, Nancy Klimas, Cindy Bateman, and Chuck Lapp.

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!
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I have chosen to limit this review to the presentations that I believe would be most informative and most appreciated by clinicians and patients. This is not meant to be an exhaustive review. Presentations are summarized to the best of my ability, recognizing that errors, omissions, and misinterpretation are all possible. I apologize for any misinterpretations, and welcome your comments or corrections.

Charles W. Lapp, MD, Director
Hunter-Hopkins Center, P.A., Charlotte, North Carolina
October 7, 2011

This material is copyrighted, but may be reprinted with permission of the author and with appropriate credit.
Contact drlapp at drlapp.net.  (© 2011)