Yes, my husband actually responded! He does not get involved in advocacy per se but this has crossed the line into the medical arena and can affect patient diagnosis, treatment, reimbursement and disability issues. Today it the deadline for comment to NCHS. November 17, 2011 Donna Pickett RHIA, MPH Medical Classification Administrator National Center for Health Statistics -? CDC 3311 Toledo Road Hyattsville, MD 20782 Via email: Donna Pickett <firstname.lastname@example.org> cc: NCHS <nchsicd9CM@cdc.gov> Re: ICD-?10 CM & ICD-?9 revisions for CFS (Chronic Fatigue Syndrome) Dear Ms. Pickett: I am a physician with 20 years experience treating patients with ME, CFS and FM. Although there are some similarities, they are dissimilar enough that they should be considered three separate entities. FM is mainly a muscucloskeletal pain condition; CFS is profound fatigue substantially reducing functional capacity. ME is a disease with primarily neurological challenges, dysautonomia and CNS disturbances. For the most part, the primary providers for FM are Rhumatologists; for CFS, internal medicine; for ME neurologists/ID specialists. The providers are appropriately different as it should be because the most effective treatment protocols are quite different. ME has a clearly defined disease process while CFS by definition has always been a syndrome. A syndrome (for example CFS) is defined by symptoms. A disease (such as ME) is defined by symptoms plus objective and measurable findings. Evidence based medicine requires an appropriate treatment plan which must correspond to the patients diagnosis. Each ICD code represents a specific diagnosis, based on the corresponding definition. If a doctor fails to properly indicate the true nature of the patients illness through proper coding it will inevitably result in difficulty getting approval for appropriate treatment. Patients with a discreet neurological illness will not be properly identified and treated if diagnosed with a fatigue syndrome. For children with ME, a CFS diagnosis can be disastrous. Not only does the general public not get it, but if you look at the various department of social services guidelines for recognizing abuse and neglect, it includes many of the symptoms used to define CFS. Major red flags are fatigue, sleepiness in class, tardiness, decreased or erratic attendance. All you need is one over anxious teacher to misinterpret and parents have little recourse. It happens way too frequently. Children may be forcibly subjected to inappropriate or harmful treatments and forced to attend school, which can cause a great deal of damage, sometimes permanent. Or children may be taken into State custody. There are few pediatricians who understand ME so it is difficult to find support or backup. No one who cares about children should allow kids with ME to be diagnosed with CFS or in any way connecting or combining them as this proposal by the Coalition 4 ME/CFS would do. For years persons with CFS (or CFIDS) have been subject to ignorance and derision from the medical profession, educators and the general public. Mention CFS often elicits an oh yeah, I was real tired too. I think I might have had that. Understandably, people with CFS are frustrated. The initiative to link ME with CFS may simply be a desperation attempt to get more respect. From the medical perspective, this is the wrong move. If you look at all the definitions of these illnesses it includes a huge array of signs and symptoms. It is absurd to think that there is one cause and one cure for the people with such diversity of complaints and problems. Throwing ME and CFS together into one heading or one diagnosis is the last thing that should be done. The only way to establish better diagnostic and treatment protocols, or for basic and clinical research to make any sense is to have well established and well circumscribed cohorts, which this will not provide. This is what, for the most part, has been done, and the results for patients in terms of diagnosis or effective treatment have been abysmal. This must stop. I feel the frustration of persons with CFS but it does not make sense to link up CFS with ME anymore than CFS with MS or with anything other distinct diagnosis that may share the vague symptom of fatigue. To dredge up an old idea, CFS should have a more appropriate name. One that is taken seriously, but it should be one that stands alone, and one which would not be automatically confused or mis-referenced as "chronic fatigue." People with CFS deserve this. CFS could certainly and deservedly be renamed or redefined as appropriate; however, misappropriating or linking to another disease is not the answer. I recommend that ME should remain as G93.3 under Diseases of the Nervous System. I recommend denying the request to classify CFS as G93.9. If CFS should be reclassified/redefined/renamed then do so without involving or interfering with any other illness, especially one for which a CFS diagnosis would be inappropriate or harmful. I disagree with NCHS Option 2. ME should not be moved or subdivided or put under a "chronic fatigue syndromes" category. Sincerely, Dr. Paul J. McLaughlin .