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Questions regarding the Pandora/Coalition for ME/CFS ICD-9 & ICD-10-CM code revision

Jill McLaughlin

Senior Member
Questions regarding the Pandora/Coalition for ME/CFS ICD-9 & ICD-10-CM code

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):

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:

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?

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.

Jill McLaughlin

Senior Member
These answer some questions. But was the intention to remove
ME from the ICD?

Coalition's FAQ Updated
New questions added, some updated.


Note to moderators: The other thread is locked. I am not intending to disrespect that decision. If you want to merge the two together, with this post at the end, with it still locked, please do. If you want to leave this one and lock it too, that is fine.

I am not meaning to open up a new thread of discussion, but accusations have been going around that the coalition is not answering recent questions. It was always planned that the FAQ would be updated as new questions came up.



You really did not have the authority or expertise to do this.
The "coalition" is a stretch. Pandora and WI are the only real
groups (and they do not have that many members), others
were online sites or blogs or support groups. You claim there
were professionals involved, but can't say who they are? Why?

People are ticked that we now have to scramble and figure
things out under a deadline, because you did this, without our
knowledge or consent.