There has been talk of this lately, for good reason. Hold the CFSAC accountable for trying to change the name to ME/CFS and recoding CFS to ME, which will eliminate ME as a dx in the US. ME/CFS is NOT a name change or new name. ME is not new and ALL name change efforts were to get rid of the demeaning and derogatory CFS, which this does not do. Members have said that they are concerned and will "revisit" it. Then dead silence. No dialogue. The CFSAC meeting is about a week before the NCHS deadline so not much time for revisiting. The CFSAC is a CFS committee. They should not interfere with "our" illness, which is NOT CFS. Take this to HHS/Congress etc. While we're at it, let's hold the Coalition 4 ME/CFS accountable. They were to a large degree behind the CFSAC motions as evidenced by the inundation with ME/CFS signs and tee shirts. They are the masters of PR, though, again, most of the stakeholders were not there. And this Coalition 4 ME/CFS, a relatively small group of basically unelected and un-appointed patients/lay persons took it upon themselves to make this proposal for a change in federal policy behind the backs of the majority of the community/ stakeholders. ME is not a fatigue syndrome, the erroneous assumption upon which the rest is based and carried through. And if this isn't bad enough, let's hold the CFIDS Association of America and IACFS/ME accountable. There are major revisions of ICD codes that have been presented to NCHS and have been accepted for consideration. This has a significant impact on the insurance issues, reimbursement, benefits, etc. And the ICD codes determine the diagnosis. This will in effect make ME the same as CFS and no longer a diagnosis in the US other than as a synonym for CFS. (Yes, they say that this is what the WHO and other countries have done, but it has made NO difference or any improvement in recognition or the "CFS" worldview whatsoever.) These are our national orgs, and no position? Comment? Even an explanation? Patients were left trying to figure this out on their own while under a narrow deadline by NCHS to be able to make comments or oppose this. There was a presentation on the code changes at the IACFS/ME conference. Not even the common courtesy of a report, other than a mention by Dr. Lapp. Clearly there has been not even a fleeting thought of accountability for anything. We had better start demanding some. Jill McLaughlin .