ICD codes determine the diagnosis. We have recognized "It's the name, stupid" and even "It's the definition, stupid." But perhaps it should be "It's the diagnosis, stupid." They all come into play, especially for advocacy. The name sets the public awareness scene. The definition is most important for research purposes to define a reliable and representative patient cohort. The diagnosis is for the clinical setting. More importantly, they all have to match and be used specifically and consistently with the same terminology and meanings. This is where things have spun out of control and lost the plot as terms all used differently or to mean different things. For practical purpose, the ICD code determines the diagnosis. ICD codes are beyond obscure codes used for billing purposes or gathering statistics. With the overreach of electronic records, the code IS the diagnosis that is in your record and follows you. The ICD codes are the diagnosis, but do NOT determine what that diagnosis actually is (which is what the disease definition does). This is where the Coalition 4 ME/CFS proposal to change the ICD codes fails to do what they say they want or what claim it will; in fact it will do the opposite. Changing the code to neurological will not make a difference. It will still be a fatigue syndrome diagnosis of exclusion. CFS does not define or describe a neurological illness so fudging the codes will not help. The code will not override the definition. However, the information that the Coalition 4 ME/CFS are giving to the patient community seems to be misleading and deceptive. They claim that their recommendations to NCHS will not affect ME and state that it is only to reclassify CFS as neurological. But their actual recommendation to NCHS was to classify CFS to the same ICD code as ME at G93.3, which will combine them both under a single code (see info below). To change the code for CFS to the same code as ME will only make them the same (diagnosis) and will be viewed as synonymous terms. Adding the term ME will still not change what it is. True ME will not exist. The ME-ICC will be for naught, and this proposal does the opposite of what the ICC calls for. This clearly reflects their intention for ME=CFS=ME/CFS which they have promoted and advertised all along. Hint: this is what Wessely does: it allows him to study fatigue and pretend to be studying ME ME is not a fatigue syndrome. This proposal would deprive ME patients of their rightful diagnosis by keeping it officially as and connected to CFS. ME is coded correctly as it has been for 40 years and should remain as is and not be changed or subdivided. CFS is coded correctly as is to fit the current definition. Those with ME should oppose the changes put forth by the Coalition 4 ME/CFS. Contact: NCHS review committee: nchsicd9CM@cdc.gov and Donna Pickett, RHIA, MPH Medical Classification Administrator National Center for Health Statistics email: firstname.lastname@example.org November 18, 2011 is the deadline for receipt of public comments on proposed code revisions discussed at the September 14, 2011 ICD Coordination and Maintenance Committee meeting. Jill McLaughlin ============= The Coalition 4 ME/CFS proposal, summary, FAQ etc. say that it is only to reclassify CFS as neurological: http://coalition4mecfs.org/ NCHS report states that the Coalition 4 ME/CFS recommended that CFS be added as an inclusion term along with ME under code G93.3. http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf *The Coalition 4 ME/CFS has said that there were doctors or medical professionals involved or who supported this proposal. Yet the only basis of support I have actually seen them produce as evidence are CFSAC recommendations. But again, the only CFSAC recommendations I have seen are to change CFS to a neurological code, but not code it to ME *as they have actually done.