USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

Oh, you're right!

 

The proposal in the first post makes this possible. No?

But I think this is connected to other problems. Doctors will favor certain names (e.g. in Germany it's CFS), and it can't be ascertained that they apply the according diagnostic criteria (SEID - IOM, ME - ICC/CCC, CFS - Oxford, Fukuda?). I think such a coding will increase confusion.

 

I personally think SEID getting a code would mean ME and its criteria will be further sidelined. CFS has been indexed in the alphabetical list to ME in ICD 9 and ICD 10 (not the American ICD CM). The outcome in my view certainly here in the UK is CFS has wrongly been conflated with ME and hardly anyone now gets a ME diagnosis. However, the public and even doctors still think of CFS as just another word for ME and so people say they have ME when they wouldn’t meet the stricter ME criteria, likewise of course there are those with a CFS diagnosis who would meet ME criteria. Just a huge mess.

 

That's my reading of it. This may, in fact, be helpful if you believe patients should be stratified by which criteria they fulfil. It also solves the issue of hybrid terms like ME/CFS or CFS/ME, since the coding makes them separate entities at last.

There is another argument (which some people won't like) that at present we have no evidence to convincingly separate any of these diagnoses, which would therefore mean only one code is needed. Ironically, those who most want to separate the three diagnoses appear to want to put them all together into one code. I think that's driven more by a distaste for the label SEID than a logical response to what's being proposed.

I'm not sure that follows. If a doctor prefers the name CFS, he's likely to use the CFS coding and use CFS criteria as well. It doesn't make sense that you'd use a criteria that uses terminology you yourself object to.

Likewise, people will probably only use SEID if they're familiar with the IOM report. It's not a term generally used by those who don't agree with the IOM report. People using the NICE guideline (which uses CFS/ME) will probably also use CFS for coding, since they have an implicit preference for that word.

There is a slight possibility that someone will use IOM criteria, say, but use a CFS or ME code, but I think that's less likely. And that's the only set of criteria where I can see people using the criteria but not the suggested name (and mostly because people think we don't need a third name).

People who like London, Ramsay or ICC will invariably want to use ME, and wouldn't know about those criteria without some awareness of the politics behind them.

The criteria used each imply an ideological preference for one term over the others. You can even tell which criteria a person is likely to prefer by their word choice (CFS/ME indicates preference for NICE or a BACME-endorsed BPS concept, ME/CFS usually indicates CCC or a 'middle ground', CFS implies either Oxford or one of the older American criteria, etc).

Those who most vehemently argue that ME =/= CFS also argue that combining the two is detrimental. So having two codes would actually be better to prevent that.

There's an issue with patients who may fulfil tighter criteria being coded under a looser label instead, but that's something that's already happening. It doesn't help to have everyone under one code in the first place. Most UK patients will have a CFS label and this won't change that. But you can't have it both ways--simultaneously arguing to separate ME and CFS, but then arguing to use one code for both.

 

Rather that coming up with different names and diagnostic criteria could they not all somehow be combined and then distinguished by type, like in Diabetes(?)

https://www.diabetes.co.uk/diabetes-types.html

(there are around 20 types listed).

(haven't thought this through but thought I'd throw it out there).

 

No, it isn't.

Extract (which does not include the background text) from Page 12: Revised Topic Packet Part 2:


One proposed revised parent class at G93.3.
Proposed to be revised to: G93.3 Postviral and related fatigue syndromes
to replace the current category: G93.3 Postviral fatigue syndrome

with 5 discretely coded for four character children/subclasses:
(G93.30) (G93.31) (G93.32) (G93.33) and a G93.39 residual category



So under this structure, Systemic Exertion Intolerance Disease, unspecfied, SEID NOS; Postviral fatigue syndrome; Myalgic encephalomyelitis; Chronic fatigue syndrome, Chronic fatigue syndrome NOS; and Other postviral and related fatigue syndromes are assigned five subcodes under a revised G93.3 parent class - not "three different codes (SEID, CFS and ME) nested under post-viral fatigue syndrome..."

 

We can separate the different names via the different set of criteria - but I agree that's a problem in itself because everything is so mixed up and people won't stick to it. I would be one of those pleading for CFS to be removed completely and keep one code for the rest because I think CFS is redundant and leads to many problems (like equaling it with CF - at least Sharpe seems to be doing this, and there are others).

Therefore I think, at this point of time, it should be kept simple (i.e. one code for ME, CFS, etc. as synonyms under neurological disorder) until we know more. Adding SEID doesn't make it simpler.

 

Thank you Suzy.

Edit: But that's what @adambeyoncelowe meant?

 

That's another option. Arguably, though, there already is a 'meta' grouping: 'post-viral fatigue syndrome'. The three labels in question are the 'types' or subgroups that are options underneath it. In other words, this is basically what the new proposal is suggesting, but with slightly different parent/child terms than we'd expect.

Now, actually, I think there are benefits and drawbacks to both the new proposals and the old system. But I don't think a kneejerk reaction to SEID as a label gives us the best solution. The question we must ask is this:

What is more important:
a) stratifying patients by label (to keep ME, CFS and SEID distinct); or
b) keeping patients together until more is known about subgroups (in which case, only one code is needed, regardless of label)?

Right. And this suggestion gets rid of the CFS NOS label, which was always confusing, and clearly separates CFS from CF. It also gives ME and CFS (and SEID) separate identifiers, which is surely better if we want to separate these concepts? It seems like this is what many people have wanted for a very long time, with the exception of the addition of SEID. Though lumping SEID patients in with either of the other labels is not without risk either.

Except the new proposal does distinguish between CFS and CF (one is an exclusion for the other), though your second point stands (one code and one label is indeed the simplest option).

 

Doesn't the proposal (see post #46) contain this in a way?

 

Yes.

 

In Germany experts say CFS, but they use CCC to diagnoze it. (I mean those who think ME is a physical disease.)

We see clearly all this is a confusing mess.

I think, concerning ICD, we have to also orient on what the WHO will agree to. And they will agree to evidence and relevance, I think.

A doctor normally doesn't care about stratifying patients. Research will want to do that, but the ICD is irrelevant to research.

 

I'm sorry, are all organisations that use ME in their name now subject to certain expectations that are decided upon by self-appointed representatives? Will the same demands be made of Action for ME, the ME Association, this forum, Invest in ME, ME Research UK etc? What about, for example, Solve ME/CFS Initiative? Will they have to comply? I'm interested in understanding the wider concept here.

 

@adambeyoncelowe said:

"Wasn't the suggestion to give three different codes (SEID, CFS and ME) nested under post-viral fatigue syndrome..."

That isn't what is being proposed. What is being proposed is:

Systemic Exertion Intolerance Disease, unspecfied, SEID NOS;
Postviral fatigue syndrome;
Myalgic encephalomyelitis;
Chronic fatigue syndrome, Chronic fatigue syndrome NOS;
Other postviral and related fatigue syndromes

assigned five discrete subcodes under a new G93.3 parent class ("G93.3 Postviral and related fatigue syndromes").

 

These proposals specifically concern the U.S. "clinical modification" ICD-10-CM, which has been adapted from the WHO's ICD-10.

ICD-10-CM is developed and maintained by the US agencies, NCHS and CDC - not by WHO, Geneva.

It was NCHS/CDC who decided to diverge from the WHO's ICD-10 chapter and coding structure for these three terms when developing the adaptation.

If NCHS/CDC wishes to include SEID, that is a decision for NCHS/CDC - just as the C & M committee approved the addition of DSM-5's "Somatic symptom disorder" to the ICD-10-CM in 2016.

SSD is not included in the WHO's ICD-10.

It is the Director of NCHS who approves recommendations for changes proposed via these ICD-10-CM C & M Committee meetings - not WHO, Geneva.

 

I know. I was just making an example where doctors use a word (CFS) and apply different diagnostic criteria (CCC instead of Oxford e.g.), and I can imagine that's not so uncommon. @adambeyoncelowe described it in more detail.

 

Option 1 (which was inexplicably omitted from the updated Topic Packet 2) was:

 

But my response was in reply to your statement:

which is why I clarified that the content of ICD-10-CM is the responsibility of, and is approved by, NCHS/CDC - not by WHO, as long as it follows ICD guidelines and conventions.

 

Note that whilst Option 2 does remove Chronic fatigue syndrome NOS from under R53.82 Chronic fatigue, unspecified, Option 2 proposes adding "Chronic fatigue syndrome NOS" back in, as an inclusion under the proposed G93.33 Chronic fatigue syndrome subcode.

So under this proposed structure, a "CFS NOS" would be retained, though now under the G93.3 parent.

Note: the WHO's ICD-10 did not consider it necessary to include a "CFS NOS" index term.

(ICD-10-CM may need to retain a "CFS NOS" for legacy data aggregation purposes.)

 

To be clear

As the research is building on showing neuro inflammation in ME, even if the studies arent large enough to definitively prove it yet, would this not also @JaimeS be another reason to not want SEID to get a separate ICD 10 CM code? As i said above, i think a SEID code will cement SEID criteria further and also risk it being used for research even though that isnt what it is intended for. We are still sorting out the CFS ME conflation, adding SEID will just create more mess and in my opinion sideline ME further.