The CAA's ignorance and negligence about a very important issue

D.Y. said...:

Hi Mindy,

To be precise about this, there is no such term as ME/CFS in any version of the ICD. The distinction matters.

The proposed placement of CFS within the ICD-10CM is basically the same as where it is now in the United States' ICD-9CM (also created by the CDC). Both have CFS in a "Malaise and Fatigue" category within a wastebasket section for "symptoms, signs, abnormal results of laboratory or other investigative procedures, and ill-defined conditions regarding which no diagnosis classifiable elsewhere is recorded". HOWEVER, the new version will have CFS renamed "Chronic Fatigue Syndrome NOS" (NOS = 'not otherwise specified') and will SPECIFICALLY PREVENT IT from being classified along with myalgic encephalomyelitis and postviral fatigue syndrome (both classified under G93.3) in the neurological disease section.

That is a BIG problem! That means anyone diagnosed with CFS cannot also be considered to have ME or postviral fatigue syndrome (which are scheduled to make their first appearances in an American version of the ICD)!

It was not always so.. in 2001, the proposal for the ICD-10CM was to put CFS alongside "benign myalgic encephalomyelitis" and "postviral fatigue syndrome" in the G93.3 section of neurological diseases. At some later point, they changed the proposal and now CFS is back to a vague, meaningless non-disease category, while benign ME and postviral fatigue syndrome remain slated for G93.3. {Note - ME and PVFS do not even appear in the current ICD-9CM!} Our advocates have had a few years warning about this. For their part, the CFSAC in 2005 recommended that CFS be recoded as a neurological disease, in G93.3 again. They seem to have lost track of their own recommendation, however, as last year they issued a new recommendation, based on their own total confusion, that doesn't even make sense, and no longer argued for moving CFS to G93.3!

The rest of the world is going to have CFS classified as a neurological disease in their versions of the ICD. The United States will not only be the odd man out in that respect, but will actually have gotten WORSE, deliberately excluding CFS from classification as a neurological disease... all thanks to the CDC.

There is very little time left to try to change this. Our advocates - the CAA, the IACFSME, PANDORA, the CFSAC, and grassroots groups - should be putting loads of pressure on the CDC and the HHS Dept in general to get in step with the rest of the planet and classify CFS as a neurological disease alongside ME. The CAA's response you quoted betrays the depth of their ignorance and negligence about this very important issue.

Some people are going to say that we should let the term CFS die and be glad that there will be a separate term for ME so that we can finally correctly define our illness. That's good in theory, but there is no widespread clinical definition for ME used in the United States, and it is also very possible that the CDC will provide one that means something very different than the disease we have. With few if any doctors even aware of what ME is, but readily diagnosing CFS, most Americans will be stuck in the wastebasket.