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

[anniekim]

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.

@Andy, does s4me have any position statement on the proposal to give SEID its own code in the ICD 10 CM?

 

[JaimeS]

That sounds rather like a stance to me.

It does mean we support the use of ICC/CCC. It doesn't mean anything about denouncing all other criteria.

@MEActNet were contacted via Twitter on September 29th

Contacting #MEAction is not the same as contacting me. I am an individual. I do not use the #MEAction Twitter account or check it except if I'm at conferences and tweeting from the account -- that's not my job. Tweeting to #MEAction means zip about whether I saw a message or not as a person.

So does #MEActNet intend to run a consultation process and submit a formal response to the meeting proposals?

The deadline for comments is November 13.

I'm not "MEAction" so I can't make that decision. It's really important to understand this.

1) No individual is #MEAction. #MEAction is made up of a group of employees and thousands of volunteers.
2) In order to take a stance, #MEAction needs to consult these people. We could never take a stance solely because there was a small group, no matter how vocal, insisting we act. We do need consensus.

If you're asking if I have brought this to #MEAction, of course I have. That's part of why I hang out here.

 

[JaimeS]

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.

It's a distinct possibility.

It seems to me that SEID was really meant as a criteria for GPs who don't know much about the illness, in order to refer to those who know more. But it could end up being used as a research criteria by accident (or by design), especially with so many different criteria floating around.

 

[Andy]

@Andy, does s4me have any position statement on the proposal to give SEID its own code in the ICD 10 CM?

No, as we have never been asked by our members to determine the consensus opinion of our members.

 

[Dx Revision Watch]

Contacting #MEAction is not the same as contacting me. I am an individual. I do not use the #MEAction Twitter account or check it except if I'm at conferences and tweeting from the account -- that's not my job. Tweeting to #MEAction means zip about whether I saw a message or not as a person.

I'm not "MEAction" so I can't make that decision. It's really important to understand this.

1) No individual is #MEAction. #MEAction is made up of a group of employees and thousands of volunteers.
2) In order to take a stance, #MEAction needs to consult these people. We could never take a stance solely because there was a small group, no matter how vocal, insisting we act. We do need consensus.

If you're asking if I have brought this to #MEAction, of course I have. That's part of why I hang out here.

What I said was:

But #MEActNet and @JaimeS were first asked, by several of us, nearly a week ago whether #MEActNet intends to publish a position statement. To the best of my knowledge, no spokesperson for #MEActNet has acknowledged these enquiries.

And what I asked was:

So does #MEActNet intend to run a consultation process and submit a formal response to the meeting proposals?

You were not being asked personally for a position statement on behalf of #MEActNet; nor were you being asked to make a decision about whether #MEActNet intends to run a consultation process and submit a formal response to the meeting proposals.

 

[JaimeS]

You were not being asked personally for a position statement on behalf of #MEActNet; nor were you being asked to make a decision about whether #MEActNet intends to run a consultation process and submit a formal response to the meeting proposals.

I'm saying I can't speak for #MEAction regarding whether they are going to run a consultation process, because I am not #MEAction. I don't get to make that decision on my own, but I have brought it to the group's attention. I hope this is clear.

[Edit: honestly I'm not sure where we're missing each other on this. Can you let me know what's unclear?]

 

[Dx Revision Watch]

I'm saying I can't speak for #MEAction regarding whether they are going to run a consultation process, because I am not #MEAction. I don't get to make that decision on my own, but I have brought it to the group's attention. I hope this is clear.

Please see my previous post.

 

[JaimeS]

Please see my previous post.

I did -- so I guess my question is, do you still have a question for which I can provide the answer?

 

[Dx Revision Watch]

I did -- so I guess my question is, do you still have a question for which I can provide the answer?

I doubt it.

 

[JaimeS]

I doubt it.

In order to clarify (one, last time):

1. I have brought this to #MEAction's attention. That means that I dropped a note in Slack, our communications tool.
2. People will have to see and ruminate on the message before an answer will be available.

............a) whether we intend to respond
............b) the character of our response, should we make one

This is the way that all organizations, rather than private individuals, must operate. I suspect we will discuss it further at next week's meeting.

I can see your frustration here, but it's a core part of how any organization must do the work. Otherwise, we leave people behind. My final word on it, unless you (or anyone else) has any further questions.

 

[WillowJ]

There was evidence before that :
http://www.investinme.org/Article 010-Encephalopathy Hooper.shtml

and now there is more evidence.

Sure. And I actually sent some such in myself. But I was ignored, possibly because not from an org and not written up into a formal proposal.

And, of course, there needs to be large studies, replications, and review articles before this will be a mainstream idea.

 

[WillowJ]

Tbh, one of the things that upset me the most was the slide saying the cause was unknown despite a vigorous search, which to me implies more searching is unnecessary.

There hasn’t been such a thorough search that there’s no more need for searching.

That risks suppression of research interest.

 

[JaimeS]

Tbh, one of the things that upset me the most was the slide saying the cause was unknown despite a vigorous search, which to me implies more searching is unnecessary.

There hasn’t been such a thorough search that there’s no more need for searching.

That risks suppression of research interest.

!!! yes that's damaging and foolish of them to imply.

 

[Alison Orr]

It does mean we support the use of ICC/CCC. It doesn't mean anything about denouncing all other criteria.”

Thanks for your response, Jaime.

I didn’t actually ask you/MEActionNet to denounce all other criteria (though it does follow that, if you support CCC/ICC you would prefer/think it’s advantageous to PwME *not* to support other criteria). I asked:

“In light of MEAction’s stance on promoting the use of the CCC/ICC for diagnostic criteria, doesn’t the attempt to legitimise SEID warrant a response? Especially from an organisation that uses ME in its name?”

From your replies to Suzy, it sounds like you agree the attempt to legitimise SEID does warrant a response from MEActionNet. I look forward to seeing it.

 

[Alison Orr]

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.

Hmmm... “certain expectations”... “self-appointed representatives”... that doesn’t sound like an interest in understanding the wider concept but more a condemnatory statement.

As far as expectations that an organisation with ME in its name should, well, represent PwME - surely that’s a no brainer? If an organisation supports SEID, then SEID should be in their name.

 

[Medfeb]

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.)

Yes, "CFS NOS" needs to be retained for data aggregation purposes. But "CFS NOS" is proposed to be retained under the subcode for "CFS" and is no longer the main term.

 

[Medfeb]

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.

Definitionally, the CFS criteria never require PEM and other hallmark criteria. But PEM is a hallmark of ME. Because of these definitional differences, the IOM explicitly stated that "a diagnosis of CFS is not equivalent to a diagnosis of ME." In my opinion, to untangle this mess, these two terms need to be separated and there is ample evidence to justify that. In the proposal that Suzy Chapman and I submiitted on ICD-11 for these terms, we recommended that these terms be separated for the same reason.

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.

I really appreciate and share the concern with adding to the existing confusion of terminology. But in the US, medical education providers, at least one medical society, and reportedly some doctors have started to use the term "SEID."

Some people have said that while the term "SEID" was recommended, it was never officially endorsed. HHS itself is using the term "ME/CFS" in its material. But HHS does not have the authority to tell the medical community that they must do so as well. And NCHS, the group managing the ICD-10-CM, has stated that if the term "SEID" is being used by medical providers, then they must provide a code for it.

If a code is to be added, then I'm only aware of two options: 1) equate it to one of the other 5 codes - e.g. CFS or ME or 2) give it a separate and distinct code.

If a code is not added for SEID, then what code do the medical providers use if they are using the term SEID?

IMO, this is complicated mess for which there is no simple solution in the short term.

 

[adambeyoncelowe]

Yes, "CFS NOS" needs to be retained for data aggregation purposes. But "CFS NOS" is proposed to be retained under the subcode for "CFS" and is no longer the main term.

Exactly. CFS NOS is still there, but nested under 'postviral and other fatigue syndromes', rather than under 'other signs and symptoms'. That's at least an improvement.

Definitionally, the CFS criteria never require PEM and other hallmark criteria. But PEM is a hallmark of ME. Because of these definitional differences, the IOM explicitly stated that "a diagnosis of CFS is not equivalent to a diagnosis of ME." In my opinion, to untangle this mess, these two terms need to be separated and there is ample evidence to justify that. In the proposal that Suzy Chapman and I submiitted on ICD-11 for these terms, we recommended that these terms be separated for the same reason.



I really appreciate and share the concern with adding to the existing confusion of terminology. But in the US, medical education providers, at least one medical society, and reportedly some doctors have started to use the term "SEID."

Some people have said that while the term "SEID" was recommended, it was never officially endorsed. HHS itself is using the term "ME/CFS" in its material. But HHS does not have the authority to tell the medical community that they must do so as well. And NCHS, the group managing the ICD-10-CM, has stated that if the term "SEID" is being used by medical providers, then they must provide a code for it.

If a code is to be added, then I'm only aware of two options: 1) equate it to one of the other 5 codes - e.g. CFS or ME or 2) give it a separate and distinct code.

If a code is not added for SEID, then what code do the medical providers use if they are using the term SEID?

IMO, this is complicated mess for which there is no simple solution in the short term.

Agreed. And it will probably remain a mess until one diagnostic criteria is validated over the others. Doctors will use the labels they prefer due to their own bias.

 

[Inara]

Definitionally, the CFS criteria never require PEM and other hallmark criteria. But PEM is a hallmark of ME. Because of these definitional differences, the IOM explicitly stated that "a diagnosis of CFS is not equivalent to a diagnosis of ME." In my opinion, to untangle this mess, these two terms need to be separated and there is ample evidence to justify that. In the proposal that Suzy Chapman and I submiitted on ICD-11 for these terms, we recommended that these terms be separated for the same reason.

Personally, I agree.

But do you think doctors will follow that?

For me, that's important. I think nearly everyone in the ME community who is active online knows the problems and differences of "CFS vs. ME". But most doctors will not. Most doctors won't care. Unless there are guidelines explaining the differences - and giving rules - (at least in Germany) CFS will be diagnozed in 98% of the cases (that is, if it is diagnozed at all). Nearly no doctor knows ME, and if you say CFS it rings a bell. It's quite possible other countries will do it, too. Maybe the US - due to IOM - won't do it. I doubt there will be such guidelines in the near future.

I think you would need education. But I think this won't happen.

So if CFS and ME get two codes, what have we to do to avoid this? Or is there no problem at all?

Some people have said that while the term "SEID" was recommended, it was never officially endorsed. HHS itself is using the term "ME/CFS" in its material. But HHS does not have the authority to tell the medical community that they must do so as well. And NCHS, the group managing the ICD-10-CM, has stated that if the term "SEID" is being used by medical providers, then they must provide a code for it.

I don't think there has to be an own code for SEID just because some people decided to use it. If you assign a code, its usage will be increased, if there isn't a code, maybe its usage will stop.

If a code is not added for SEID, then what code do the medical providers use if they are using the term SEID?

I don't think SEID should be used.

Doctors will use the labels they prefer due to their own bias.

Exactly. I think there shouldn't be too much room for bias.

 

[adambeyoncelowe]

Personally, I agree.

But do you think doctors will follow that?

For me, that's important. I think nearly everyone in the ME community who is active online knows the problems and differences of "CFS vs. ME". But most doctors will not. Most doctors won't care. Unless there are guidelines explaining the differences - and giving rules - (at least in Germany) CFS will be diagnozed in 98% of the cases (that is, if it is diagnozed at all). Nearly no doctor knows ME, and if you say CFS it rings a bell. It's quite possible other countries will do it, too. Maybe the US - due to IOM - won't do it. I doubt there will be such guidelines in the near future.

I think you would need education. But I think this won't happen.

So if CFS and ME get two codes, what have we to do to avoid this? Or is there no problem at all?


I don't think there has to be an own code for SEID just because some people decided to use it. If you assign a code, its usage will be increased, if there isn't a code, maybe its usage will stop.


I don't think SEID should be used.


Exactly. I think there shouldn't be too much room for bias.

If a doctor thinks SEID criteria are appropriate, she will use them and just use the existing ME code or the US 'CFS NOS' code. I don't think people will stop using the criteria just because it doesn't have a code. Only a single validated criteria (possibly backed up by biomarkers) will do that.