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U.S. stands alone in its classification and coding of CFS

The U.S. will be the only country in the world to classify and code CFS in this way.  This was a remark echoed by Dr. Leonard Jason, Dr. Christopher Snell and other panelists during this presentation, which could cause increasingly more problems for patients as these codes continue to be upgraded but are not used in a consistent manner.

The implications of CFS being placed into this group of "R code" conditions could be very serious because it will become disconnected from the rest of the world, it might not be accepted in certain types of reporting or decision making. The assignment of ICD codes greatly relies on a clinician's judgment-if a doctor does not understand, or fails to pick up on, the viral component in a given patient's illness, then that patient will fall into this vague, "orphaned" category and will have a vague, orphaned illness.

Worse yet, are the potential risks of having CFS be placed under the proposed category of "Complex Somatic Symptom Disorder" (CSSD), in the forthcoming Diagnostic and Statistical Manual of Mental Disorders (DSM-5), effective May 2013.

One of the attorneys on the CFSAC panel warned this could have disastrous results, particularly for patients seeing doctors who are not well educated about CFS. They could be erroneously lumped in with this somatic disorder group and affect disability benefits as there are two year limits for certain mental disorders.