Questions regarding the Pandora/Coalition for ME/CFS ICD-9 & ICD-10-CM code revisions In the coalitions' proposal to NCHS (Option1 from the NCHS meeting report), Myalgic Encephalomyelitis (ME) was not included. Some have surmised that it was that no changes to ME were requested, but seems it would still be listed in the final copy and would be exactly as it would appear in the ICD. Are you concerned about this, given your involvement, or are you certain that ME will be included? Or was the coalition's intention to remove ME from the ICD-10-CM? [page 10, Option 1 Coalition for ME/CFS): http://www.cdc.gov/nchs/data/d9/TopicpacketforSept2011fpdf.pdf] The proposal asked for an expedited review and implementation of proposed changes. What does this mean for the date deadlines given for the submission of public comments? Would this perhaps kick it back to the earlier date listed on the timeline? [page 11: http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf] What is ICD-10-CM/PCS? What are code freezes and what effect if any would it have on changes or cut off dates for comments or implementation of any changes? [http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm] Does the CFIDS Association of America support this proposal? There have been references to a coalition steering committee. Three patients are listed as representatives. Who are members of the steering committee? Are there any scientists or doctors on the steering committee or any who were involved in formulating this proposal? What scientists or professionals support this proposal as it has been stated. This proposal and presentations were done without the knowledge or input of a vast majority of the patient community, and ME advocates in particular, which is why the omission of ME is disconcerting. This was very unfair and underhanded as it greatly affects our diagnosis and we are major stakeholders. Now we are trying to scramble to figure this out and respond under deadlines, with no cooperation or even common courtesy of a few answers from those who did this behind our backs. Questions have been asked directly, publicly and privately to no avail. Nor have there been any reports from the conference as to what was discussed. One messageboard discussion on this topic had over 6000 views and nearly 1000 replies within one week. This is obviously a topic of concern and interest and we need clarity so that we have correct information and can act accordingly. Otherwise, any help or feedback would be appreciated.