Bob and Suzy
Thanks so much for laying all that out.
I wanted to give a little additional information on each of the options in terms of what was in the proposal, what I presented at the meeting on Sept 14, and the followup discussions since. There are basically 4 options for pointing CFS to G93.3 - 3 are essentially what Bob has listed and the fourth was the counterproposal that I presented at the meeting in response to Option 2. All 4 options were presented and discussed at the IACFSME meeting.
A few points that go across options
- Regarding Excludes - it should be Excludes1 for each option. This choice was actually recommended by a participant at the meeting in response to the NCHS proposal to use an Excludes2.
- Regarding dropping benign from ME - based on meeting feedback, I think the most that can be done is rename to ME (benign). if this is allowed, it should be done in each option
- Regarding changing the heading of G93.3 in option 2,3, and 4 once subcodes are created - need to understand what latitude is allowed here by WHO rules.
- Regarding the use of NOS - there may be some coding conventions for that to be used under certain circumstances. See Option 2 where this is mentioned. I need to follow up with NCHS to understand the usage.
Bob - I tried to get Option 3 and the revised option 4 into your nice format but couldnt figure it out so its not very pretty.
I apologize for not providing this information sooner but I am away from home for a month with very limited access to email. Please PM me if you have any questions or if I seem to have misstated something and I will try to respond as soon as I can
Mary Dimmock
Option 1 was the option that the coalition actually proposed. This option is also included in the NCHS materials for the meeting
- The Coalition proposal only specified 'Excludes', not 'Excludes1'. The NCHS defined this as 'Excludes1' in their meeting material
- Technically, I don't know if an 'Excludes' is required for both PVFS and CFS since CFS points to the PVFS category which has an excludes. If both are required, then presumably an 'excludes' for ME is also required. In the proposal, I specified an excludes for CFS only since the proposal only focused on that term.
Option 2 was developed by the NCHS and included in their meeting materials. They proposed this because they have years of data on CFS and PVFS that they do not want to lose by having one code. ME as a code is only rarely used. The intent in this proposal from the PVFS is that the term PVFS be used for those patients with a viral trigger and CFS be used for all other cases. There are three issues with that proposal:
- both the ME/CFS Canadian Consensus Criteria and the ME-ICC include viral and bacterial triggers and the ME/CFS CCC explicitly include other triggers like environmental. Splitting out ME-ICC patients with a bacterial trigger and giving them a different diagnosis of CFS would be inappropriate.
- Today, U.S. patients who have a known viral trigger have been diagnosed as having CFS
- PVFS is an ill-defined term but there is evidence that some think of it as the diagnosis to be given initially, followed by the CFS diagnosis once either more evidence has been acquired or 6 months has passed
Two other comments
- In developing option 2, NCHS specified the Excludes2 for CFS on the R code. One of the participants in the meeting on Sept 14 stated that she felt the Excludes1 should be used because it wasnt appropriate to have both a G93.3 CFS and a R53.82 CF diagnosis at the same time.
- Once PVFS was a subcode, NCHS needed to provide a new title for the category G93.3 which is where 'Postviral and other chonic fatigue syndromes' came from. This is addressed below in option 3.
- As above, I dont know whether this has to be an Excludes for each term in category G93.3 or whether the excludes for G93.3 (the overall term) covers it.
- Regarding the term CFS NOS under G93.3 I asked why the NOS was used there and believe I understand that it has to do with establishing a default term and because there is no term under the subcode. But I am not clear still and need to follow up on this further. From my perspective, its extraneous and inappropriate to have both a CFS and a CFS, NOS NOS from what?
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Option 3 . To address the issued laid out above in Option 2, which I saw 2 days before the meeting, I presented a counterproposal during the meeting. THis counterproposal is not in the NCHS meeting materials.
G93 Other disorders of brain
G93.3 Postinfectious Fatigue Syndromes
G93.31 Postviral fatigue syndrome
Excludes1: chronic fatigue, unspecified (R53.82)
G93.32 Benign myalgic encephalomyelitis
Chronic fatigue syndrome
Excludes1: chronic fatigue, unspecified (R53.82)
R53 Malaise and fatigue
R53.8 Other malaise and fatigue
R53.82 Chronic fatigue, unspecified
Excludes1: postviral fatigue syndrome (G93.31)
Excludes1: Benign myalgic encephalomyelitis (G93.32)
Excludes1: chronic fatigue syndrome (G93.32)
Notes on this proposal
- Addresses the issue of splitting ME-ICC cases with viral triggers from ME-ICC cases with bacterial triggers into two separate names
- Counterproposed a different title to G93.3 that what NCHS proposed in Option 2. As Suzy points out, its not clear what latitude there is to change this although the NCHS had already proposed a modification here
- I only specified the G93.3 codes in the presentation material with an 'Excludes' for CF. I believe this should be Excludes1 and that there should be Excludes1 on the R codes for G93.3. As stated above, I need to understand whether an Excludes can be provided at the G93.3 level or whether it is needed for each subcode
- The counterproposal did not use the term NOS - need to follow up as stated above
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Option 4 There is a fourth option - 1 code for each of the three terms. This is basically what IMEA have proposed and is basically what Bob laid out in a previous post.
G93 Other disorders of brain
G93.3 Postinfectious Fatigue Syndromes
G93.31 Postviral fatigue syndrome
Excludes1: chronic fatigue, unspecified (R53.82)
G93.31 Benign Myalgic encephalomyelitis
Excludes1: chronic fatigue, unspecified (R53.82)
G93.33 Chronic fatigue syndrome
Excludes1: chronic fatigue, unspecified (R53.82)
R53 Malaise and fatigue
R53.8 Other malaise and fatigue
R53.82 Chronic fatigue, unspecified
Excludes1: postviral fatigue syndrome (G93.31)
Excludes1: Benign myalgic encephalomyelitis (G93.32)
Excludes1: chronic fatigue syndrome (G93.33)
A few notes
- The IMEA proposal included a title of Viral and infectious and post-infectious diseases of the nervous system with post-exertion symptoms. I know a number of patients want to get the word Fatigue out of the title and expect that is why this title was proposed. But to Suzys point, I dont know what latitude there is but if it can be changed, it should be changed on option 2,3 and 4
- The IMEA proposal also proposed dropping the term Benign from Benign ME. This was discussed at the meeting on Sept 14 and because of WHO rules, it can not be dropped. The audience suggested that it be renamed to ME (Benign). I left the word Benign on all options but if it can be moved to the end, that should happen on every option.
- The IMEA proposal has ME first but I believe the discussion at the IACFSME used G93.31 for PVFS and G93.32 for ME.
- I am not sure why they included the term CFS NOS but this relates to the issue listed in option 2 above
- The Excludes should be an Excludes1. I dont know whether it technically needs to be listed for each term or for the category. Whatever decision is made, this should also be the same for all options.