revisions
In the coalitions' proposal to NCHS (Option1 from the NCHS meeting summary
report), Myalgic Encephalomyelitis (ME) was not included. Was this intentional
or inadvertent? Some have surmised that it was because no changes to ME
were requested, but seems it would still be listed in the final copy
as requested
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 it your intention to remove ME?
[page 10, Option 1 Coalition for ME/CFS):
<mailbox:///C|/Users/Rover/AppData/Roaming/Thunderbird/Profiles/pqczar8n.default/Mail/pop.gmail.com/http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011fpdf.pdf>http://www.cdc.gov/nchs/data/icd9/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 kick it back to the earlier date listed on
the timeline?
[page 11:
<mailbox:///C|/Users/Rover/AppData/Roaming/Thunderbird/Profiles/pqczar8n.default/Mail/pop.gmail.com/http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf>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?
[<mailbox:///C|/Users/Rover/AppData/Roaming/Thunderbird/Profiles/pqczar8n.default/Mail/pop.gmail.com/http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm>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 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.
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.
Jill McLaughlin
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